scared & confused

[AngelManFL]

Hello everyone and anyone,

About 18 months ago, I started to have alot of weakness in my legs and a great deal of pain trying to fight that weakness, hand pain, joint pain and muscle pain. tested for lyme, RA (which is always a little high to date), I can't even remember how many test... many many months later with several different diagnosis' and many doctors - still nowhere. First it was rheumatoid, then fibromyalgia and so and so on.. now I am in a wheelchair(since May) and losing motor skills fast. For a little history - 18 months ago I had just turned 39 weighed 206 pounds mostly muscle(now 170) and was in the best physical shape of my life! so I thought... My brother owns a specialized drilling foundation corp., which I run from the inside and he from the out. I am still working full time sorta, trying to hide the loss of my motor skills... in a wheelchair it is somewhat easier.. I used to type 60 wpm blindfolded, I have been at this bit for 20 minutes.. not one rheumatologist, neuro, or anyone has ever mentioned or even hinted that I might have ALS until a week ago, and now I have an appt at the Mayo Clinic in Jacksonville, FL Nov 29th. I don't mean to sound like a baby but I am scared to death that I don't have too much time left to communicate... in 18 months I have lost my ability to walk, to type and now my speech is becoming slurred and very difficult, I really have to concentrate hard to get things out properly... all this and I am still running the corporation and I am the primary caregiver of my mother. I don't have time or strength to be angry with past doctors or misdiagnosed whatever - like I said, 18 months ago no one could have ever looked at me physically and believed I was ill... I'm sorry this is long and I don't have time for self pity, should I be finding other care for my mom? looking for someone to takeover my job? making arrangements??? I just had a signature stamp made for work to sign checks because I can no longer get my hands to do it.... I feel so lost and so confused and so overwhelmed I do not even know where to begin. I have not told my brother or my mom that they now suspect ALS... I just cry myself to sleep every night. Nobody ever mentions pain associated w/ALS, but I suffer horribly.. Although I have noticed the less I fight and try to hide how fast I am declining the less the physical pain... but also the faster decline... this now taken me more than an hour to type and I can't go any further at the moment... I have read a couple of your threads and I guess I just don't want to feel so lost.. I feel in my heart I may not have much time left to communicate, but will do my best. Please forgive me for mispelled words or poor grammar...

Don

[liz]

Don -

When you get to the clinic, ask about assistive devices for communication. Or you can research this topic here using the Search option on the tool bar above. Finding out how technology can help you continue to communicate if you can't speak may provide a little reassurance.

Liz

[ZenArcher]

As the old saying goes hope for the best but plan for the worst. Researching alternative care for your mother as well as having someone ready to take over the business can't hurt. Regardless of what is wrong contingency plans are always good and if nothing else it will help relieve some of the stress you're currently under.

[scared of als]

Hi scared to late im sorry you are going through this difficult time right now! please no that i will pray for you and your family, iam new on here and weve all had are trials and tribulations and it just hurts me to even no that people are suffering out there with this disease. I hope your apt goes well at the mayo clinic please wb and let me no thanks jenny

[Peg B]

Hi Don,

I am so sorry to hear about your situation. Please know you are in my thoughts and prayers.

I very much agree that it will be helpful not only to the future but to you now to make contingency plans. It will give you some very practical things to do and you will know you have done the best you can do for your family. You might consult a gerentology person, doctor or lawyer or "Elder Care" for your mom. http://www.eldercarelink.com/default.asp?group=car&cpgn=eld&ad=5000&source=over&lbl=E100&OVRAW=%22Elder%20Care%22&OVKEY=elder%20care&OVMTC=standard&OVADID=2400945022&OVKWID=23198545022 We have no idea of your mom's situation but I would imagive it will be very helpful to both your mom and brother if you can help them with choices and contacts for both her care and the responsiblilities at work.

To be proactive will help you deal with the realities of your physical conditions. Please note I was first DX with ALS but the ALS clinic found another possiblity.

Take good care, Peg

[AngelManFL]

It is a wonderful feeling just knowing that not just "I" - but "we" are not all alone in having to go through this 'experience' alone.

[CindyM]

Hello Don and welcome to the forum. Like Annmarie, I am hoping you have something other than ALS. Keep in touch and let us know how it goes! Cindy

[brooksea]

Hi Don,

It is terrible that you have to wait so long to get seen at the clinic! Have you contacted the ALS Assoc in your area? They may be able to help you get an earlier appt, don't know, but worth a call.

I truly hope you do not have ALS and they can reverse your symptoms.

Agree with the others, make plans just in case you need to rely on them.

Please update us on things.

[JohnKelly]

Don:

I have gone through a similar experience. My symptoms started with leg weakness 4 years ago and presented at the same time as many rheumatalogical symptoms: pain, numbness, swelling in the hands, and extremely high ANA titres. I was diagnosed with mixed connective tissue disease (an autoimmune disease) AND lower motor neuron disease. The Mayo Clinic in Minn. confirmed these DX over two years ago and said they were unrelated. I then went to the local ALS clinic, where the neuroloist felt that I may not have ALS because of the simultaneous presentation with an autoimmune disease and the many autoimmune neuropathies, which are very poorly understood. While I may indeed have ALS, I have been given seven different immune therapies to date, so far with no success. I am confined to a wheelchair and am losing arm and hand strength. A few more treatment options remain.

My advice to you is to aggressively pursue the autoimmune possibility. You must find a neuro with experience in this area, and the ALS center in your area is probably your best bet. The ALS experts know when a particular patient does not present the typical ALS pattern, and will turn over all stones to find any other explanation for your symptoms. I initially resisted going to an ALS clinic, fearing it was tantamount to accepting the diagnosis and giving up hope of another diagnosis. I was completely wrong and I should have gone sooner.

Second, I would advise you to plan for the worst. If it turns out you don't have ALS you have lost nothing that can't be returned. But if you don't prepare now for the challenges ALS presents, they become even harder later. I know this from personal experience as well.

Best wishes to you, and let me know if I can help in any way.

John

[AngelManFL]

Thank you all for your encouragement, itis wonderful to converse with someone who "knows" the emotions and frustrations of this process....

[AngelManFL]

Don:

I have gone through a similar experience. My symptoms started with leg weakness 4 years ago and presented at the same time as many rheumatalogical symptoms: pain, numbness, swelling in the hands, and extremely high ANA titres. I was diagnosed with mixed connective tissue disease (an autoimmune disease) AND lower motor neuron disease. The Mayo Clinic in Minn. confirmed these DX over two years ago and said they were unrelated. I then went to the local ALS clinic, where the neuroloist felt that I may not have ALS because of the simultaneous presentation with an autoimmune disease and the many autoimmune neuropathies, which are very poorly understood. While I may indeed have ALS, I have been given seven different immune therapies to date, so far with no success. I am confined to a wheelchair and am losing arm and hand strength. A few more treatment options remain.

My advice to you is to aggressively pursue the autoimmune possibility. You must find a neuro with experience in this area, and the ALS center in your area is probably your best bet. The ALS experts know when a particular patient does not present the typical ALS pattern, and will turn over all stones to find any other explanation for your symptoms. I initially resisted going to an ALS clinic, fearing it was tantamount to accepting the diagnosis and giving up hope of another diagnosis. I was completely wrong and I should have gone sooner.

Second, I would advise you to plan for the worst. If it turns out you don't have ALS you have lost nothing that can't be returned. But if you don't prepare now for the challenges ALS presents, they become even harder later. I know this from personal experience as well.

Best wishes to you, and let me know if I can help in any way.

John

dkettle@cdkdrillshafts.com

John, Please contact me, I found an ALS CLINIC just south of where I live and plan to schedule appt ASAP! Somedays are just so difficult to get through and I am wondering of working is keeping me going or making it worse... Thank you so much for your solid advise - I plan to follow it with a glimmer of hope..

Don

[vmd]

Don:
...will keep you in my prayers. Let's hope for the best.

[AngelManFL]

To all of you;
I want to thank each and every one of you for being so kind and offering such wonderful advise and most of all your prayers. I did get an appointment for Nov. 5th with the ALS Clinic in my area (Suncoast Medical Services) in downtown St Petersburg, FL; they promised to overturn every stone possible to help me find any diagnoses except ALS, which of course made me feel better and relieved. I was under the impression that ALS was not associated with severe pain... Every evening for the past 4 days after work I literally crawl into my bed from my wheelchair in tears - take my morphine, valium and sleeping pill and then wake up around 3am with a gutteral scream coming out of my throat! just racked with pain down my entire spine and feeling like I was just hit by a bus... I callled my doctor's office to see if I can get in this morning...(my PCP has really been wonderful throughout this whole ordeal) Has anyone out there experienced such pain, it literally feels like the muscles attached to my spine from the mid-thoracic area down to my tailbone are seperating from my spine. That is the best description I can come up with. It just seems inhumane to suffer like this... I already thought I was on too much pain meds(Duragesic patch 100mcg and four Dilotid a day and now I am back to lots of tylenol and advil as well). Last night my spine seemed to contract and would not let go for almost an hour, and I don't have the words to explain how that felt except that I was terrified and could barely move or breath.. I am just terrified and so afraid something is going to happen to me before I can find a place for my mom to live and find myself a replacement at work. And what happens if I do all that and then get better!!! I've had MRI's w&w/o, Myologram CT's and God knows what else - nothing.. I'm sorry to go on and on, I am just scared... praying my doc will me with the pain.. and praying nothing more escalates until November... my motor skills are better in the morning after I get over being hit by the Bus!! (taking my first Dilotid). I don't know what I am asking - I am just desperately seeking help and answers..
Don

Don

[CindyM]

Hi Don- I am sorry you are having such a bad day. Understandable, given all your concerns. Let's hope your worries settle down as the day wears on. Perhaps some answers can be found soon for you! Cindy

[JohnKelly]

Don,

Ijust sent you a private email. Sorry for the delay, I hadn't been on the forums for several days.

John

[AngelManFL]

Hello to all,

And thank you for such kindness and thoughtful advise.. Having just recently been diagnosed - I have many suspicions. I have an appointment with my local ALS clinic, which fortunately for me is one of only two certified in Florida on Nov 5th and the Mayo Clinic being the other one on Nov 29th. I can't deny the loss of my motor skills or the slurred speech or the difficulty with swallowing or the weakness in my legs(I'm in a wheelchair) and right arm or the twitching and severe spasms (my PC Doc rx Baclofen and it has been a Godsend), but I have such severe pain in my back along my spine.. from everything I researched and read - pain is not a primary symptom of ALS... or is it just advancing in that direction. I know I should be asking these questions to my doctors, but today Nov 5th feels like it is years away.. Does anyone have any experience with so much pain... I am really trying to hold on to the theory that if I have this much pain it must rule out ALS! or am I just reaching??? any advise or knowledge with experience would be greatly appreciated..

Thanks, Don

[joelc]

I hate to be the bearer of bad news, but pain can be part of ALS. Not everyone has pain, but for some of us it is a real problem. ALS affects each us so differently, no 2 of us are the same. I hope your pain is for another reason and it is treatable!

Let us know how it goes.....good luck!

[Icanmanz]

Hi don! So sorry, I just ran into your post. Okay, you are questioning pain. Are you talking about pain, that really hurts, or discomfort, such as nagging pain? This I can still remember when my son was still with us, he used to complain about excruciating pain along his spine, his neck, he could barely hold his head up, and he would complain of a headache along with it. I know he always made sure he wouldn't run out of pain killers. I don't know about this disease, it affects people in different ways. It is so out of reach. God bless you Don, and I hope your pain goes away. Let us know, dear!

Irma

[hboyajian]

Don, My father also had back pain related to ALS. The muscles around his spinal column were the first to be affected by the illness, so in the space of 6 months he could not hold up his head at all and was unable to hold his body upright for more than short periods of time. This caused severe strain on the ligaments in his neck and back, and I think the vertebrae pressed on the discs in his back because of the unnatural curvature. So the pain was indirectly caused by ALS. We found a back and neck brace that helped somewhat with this problem. What seemed to take the pressure off the most was being in a reclined position. At this point, he was no longer working so it was possible to rest frequently. I realize that may not be possible for you and you have many responsibilities, not only for your business, but for the care of your mother. I am wondering though if you have a wheel chair that has tilt and recline capabilities. If not, this is definitely something to consider getting (expensive, but the MDA or ALSA can help). There may be other accommodations that you need to accomplish your work. I am concerned that you may not have support around you for your own increasing personal care needs. You sound like a caregiver suddenly thrust into a situation where you need to ask for care from others, which may be an unaccustomed position for you. Do you have family or friends that you can call upon at this time of difficulty? If it is ALS or some other illness, it is obviously severe enough that you need help and caring people around you for physical and emotional support. Also, if there is any way to get in to the ALS clinic sooner......maybe someone will cancel their appointment. Ask them to inform you of any cancellations. Sincerely, Holly

[Shasta]

Don...i served four years in prison. Yes and i'm not ashamed of it. I would never want to relive it but I'd never want to forget it. The one thing I found out was....."Don't hide it from the ones that can help you." I had to forget all the hiding of my drug activities. I had to open my book....and in doing so, I found out that my family was there for me. You should let your brother know. You should let your mother know. You might find that family will be your best help. Your brother may step up to assist in finding home care for your mother.

Another subject you should look in to is the art of communication. Reseach the communication techniques so you can continue without being frustrated.

But first things first. Get a proper full diagnosis and get back with here. Don't ever feel you are waisting our time with grief or unhappiness. Keep up the spirit and keep up your exercises and remember, "an apple a day keeps the doctor away." :)

Doug

[JenniLee]

Dear Don;

U wrote the words that have been causing my heart to ache. I was dx w/ ALS 2/2007. I have 2 kids and cared for them and cared for home with much hard, loving work. (I'm 38, they r 6 & 7)

I got u beat, though...I could type 90 wpm; now, it's mostle with a one-handed pecking technique!

I would like to chat by email, if u want; if not, I understand marcyjennifer@hotmail.com

With re: to your mother, maybe hiring someone to help a bit in the areas u need most.

I feel ur frustration; a year ago I did yoga, yoga booty ballet, & free weights. Now, 1 lb dumbells and stretches.

Take Good care of yourself. I pray you will find answers to your concerns.

Hugs,
Jen

[Brentt]

Hi Don, sorry to hear about the pain. Pain can be a hard thing to block at times and it takes different meds. for different people. I have been through many different pain killers and the only one that worked for me was methadone. Maybe this will help you get rid of the pain part of your problem. I can't get by without it. If I missed a dose my body would let me know it. I sure hope the 5th. bears better news for you.
Brentt

[Lorie]

This show the areas of the body where a persons ALS can start. It may explain why people have pain in certain areas.

I hope this is helpful!


I found this site that is very informative, Especially for newly diagnosed patients. I hope people will read it and benefit from it.

It all shows diagrams of the different names/parts of the body that is affected:

http://www.llu.edu/llumc/neurosciences/als/#when


Lorie-:-D

[AngelManFL]

All I can say is thank God for copy&paste!!! I went to submit this and lost my connection!!!! well here it is again...

Thank you to all of you for such great words, both those of support and real understanding, especially to Irma and Holly. I apologize for not replying for a quite some time. If the definitive answer is ALS it definitely started in my Back!! Someone asked about what type of pain - I wear a three day Duragesic 100 patch every two days, take four Dilotid 4mg during the day(still have to be able to function at work) and two 20mg Oxycontin during the night - and my pain is just barely bearable.. if I don't hear my alarm and reach the eighth hour after my first dose of Oxycontin, I wake up with a gutteral scream absolutely unable to move until I calm myself down and start with moving my fingers until I can reach the remote to lift my bed until I can reach my meds and water, then chew one Dilotid and let it disolve under my tongue and then when I am able - take my second Oxycontin... I never knew such feelings of pain could exist in the human body nevermind that the human mind could withstand it.. I am afraid to take anything stronger for fear of not being able to do my job - running a construction corporation by yourself is no small task!! We did hire two more people.. and I did come clean with my family, my Mom and my brother. Not to get too deep into things - my mother was quite less than mother of the year and no other sibling will assist her - and we will leave it at that. She is not handling it well, at least not well for me.. She does love me in her own way, but she is 70 and when I took her into my own home I fully understood she was never going to change and just accepted her that way - it's just the way it is and you can't cry over spilt milk, it just makes a bigger mess. My two aunts and two of my cousins have agreed to help her move into her own place and my cousins also will help me move into my own place and try to assist me as much as possiple. Our lease ends 12/31/2007.. Great timing - good grief..

It is hard to tell how my brother took it.. we have become very close in the past few years and he has come to trust me implicitly with his own livelyhood by giving me full control of his business! I told him with the office staff we currently have(including one of my cousins) all we would need to do was hire a Controller and stay our with current accounting firm and the business will be ok. I took him to Smith Barney and started a 401k for our key employees and got him set up with a retirement plan - his previous plan was to hand the company to me and he would stay on payroll as an 'advisor' - now at almost 50 he has to go back to 60-70 hour work weeks...

As for me - I went to the ALS Clinic - lets say it didn't leave me with much hope for a different dx, but my Dr was extremely thorough, he didn't get all the way through his neuro exam and took me into a seperate room for a Nerve Conduction study and then he took these really long wire like needles and stuck them deep into my muscles all the way up my left leg, arm and into my neck - one of the issues was I never felt any of it until he got next to my ear.. - I felt like I was back in high school miseralbly failing an exam! He did mention the possibility of it being another disease called Stiff Mans Syndrome or SMS, I looked it up once and would rather have ALS!!! They took 13 vials of blood, then I had to go back for some special Mayo Clinic blood test and then this Athena Lab in MA had to come to me and take even more blood for some special small fiber blood test. I was scheduled to go back this Monday for all the results, but they called me Wed at 4:45pm to tell all the results weren't back in and now it is for Thursday the 29th... I would love to tell you more but I am just too tired to go on any furhter.... :oops: until next time my friends.

Don

[Clbrink]

I was curious so I looked it up:

What is Stiff-Person Syndrome?
Stiff person syndrome (SPS) is a rare neurological disorder with features of an autoimmune disease. SPS is characterized by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms. Abnormal postures, often hunched over and stiffened, are characteristic of the disorder. People with SPS can be too disabled to walk or move, or they are afraid to leave the house because street noises, such as the sound of a horn, can trigger spasms and falls. SPS affects twice as many women as men. It is frequently associated with other autoimmune diseases such as diabetes, thyroiditis, vitiligo, and pernicious anemia. Scientists don’t yet understand what causes SPS, but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord. The disorder is often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia. A definitive diagnosis can be made with a blood test that measures the level of glutamic acid decarboxylase (GAD) antibodies in the blood. People with SPS have elevated levels of GAD, an antibody that works against an enzyme involved in the synthesis of an important neurotransmitter in the brain.

Is there any treatment?


People with SPS respond to high doses of diazepam and several anti-convulsants, gabapentin and tiagabine. A recent study funded by the NINDS demonstrated the effectiveness of intravenous immunoglobulin (IVIg) treatment in reducing stiffness and lowering sensitivity to noise, touch, and stress in people with SPS.

What is the prognosis?


Treatment with IVIg, anti-anxiety drugs, muscle relaxants, anti-convulsants, and pain relievers will improve the symptoms of SPS, but will not cure the disorder. Most individuals with SPS have frequent falls and because they lack the normal defensive reflexes; injuries can be severe. With appropriate treatment, the symptoms are usually well controlled.

[AngelManFL]

Clbrink, you forgot to mention that a single muscle spasm can snap any bone in your body at any given moment! Due to the fact I am waiting for the results of having been tested for SMS, I spoke to a woman whose husband has SMS, she told me that yes his symptoms are controlled by the drugs you mentioned, but that the extremely high doses have left her once hard working loving husband a drooling zombie. She is utterly distraught due to the fact she knows his mind is fully intact and that she is left with only two options - administer the drugs to him and hire 24 hour care to tend to him or let him come off the drugs and scream in agony and suffer immeasureable uncontrolable pain. My thoughts and prayers go to her and her husband - but after our conversation I was left with the fact I might be facing this one in amillion RARE Dx and the fear that it is a very real possibility that I might recieve this very same Dx on Thursday! I have no one to care for me 24/7, I will lose my job, my life as I know it and will probably end up in a cheap nursing home for the rest of my life due to the fact I am only 39 and have not given into Medicare long enough to afford much else...

In all reality, I don't feel(and hope) that I have SMS due to the fact I never had those types of muscle spasms in the beginning, mostly the small twitches or fascilations I think is the word, I don't have extreme pain in my arms and legs(just along my entire spine unfortunately), and just extreme weakness and atrophy in arms and legs... I was no body builder - but I was a very well built muscular man. I weighed 135 lbs until I turned 20 and started working hard and working out - It took me 18 years!!! to get to 210 lbs, but I truly was looking forward to turning 40 and being in the best shape of my life... I don't have the words to explain the transformation my body has taken.. the expression on my family's faces at a Thanksgiving gathering we had was pure shock! Some tried to hide it but others just blantantly looked at me in horror and told me so - you know - the way that only a family member could... my legs and arms have become so thin they just look unnatural. My size shirt was XL, but I would buy only Large size shirts because they fit snug and I looked great in them!! now I just swim in them... I guess I thought I deserved a little vanity, and my gosh - I had to work really hard for 18 years to get that way, I was one of those people who could just eat day and night non-stop and never gain a single pound! Gaining all that weight and muscle was no small task! let me tell ya - I had to work really really hard at it... and now I look in the mirror and tears well up in my eyes. The response from my family members who hadn't seen me since last Thanksgiving really hit me hard. Imean I see myself everyday and I knew I had lost a lot of weight and muscle but I never realized how much or exactly how thin I really am until that day after I went home and looked at old pictures and looked in the mirror... it was quite a blow to my psyche, I never thought of myself as vain before nor would anybody who knew me - I was no prince charming by long shot! but I never realized how drastically my own body has transformed until now. I'm so sorry for just rambling on and on... I'm just really scared about getting my results back. They having been ruling things(Dx's) out for the past year and what's left on the table is slim pickings - all of them seriously life altering. I have so many decisions to make about my home, my Mom's care and my brother's corporation I guess I am just overwhelmed.


My intention for coming on tonight was actually to say thank you to Irma - you have already suffered the loss of your son and here you are to give encouragement and prayers and love to others by reaching out to them. I'm so sorry for the loss of your son. You are a very remarkable woman, thank you so much for being so kind and loving. It must be encouraging to a great many of people who read here - I certainly know it is to me... I sincerely thank you.


Holly, you had mention you found a brace to both support the back and neck, that is one of my biggest issues right now is trying to stay sitting up all day while I am at work. Now, by the end of the day I am severely hunched over and it causes great strain on my spine. Any information you could provide would be very helpful. I have search everywhere here locally and have not been able to find anything helpful.


Jen, thank you for your words of support and encouragement.


Lorie, thank you for that great website, it was very informative.


And thank you to everyone and anyone out there listening or I guess reading.

It is just helpful to able to vent to those I know truly understand...
Next time I promise I'll 'try' not ramble..
Thanks for being out there.

[Clbrink]

I am sure that there are many things that I did not mention, I just looked it up on the net, as I have seen, it is one thing to look it up, something else to live through it.

You are the same age as my husband, 39, he was diagnosed 4 years ago, it was so hard for him, and he got very angry. He was "at the peak of his life" had a 4 month old daughter, a 7 year old step daughter, a soul mate, many toys including his monster truck and Harley, he was in great shape. I kept telling him I am waiting for that moment, where something would be said or done that would make a difference, something that we could carry with us for life. He shut down, pushed everybody away, and then got angry that people were not comfortable around him, it was a vicious circle. Now 4 years later, he has accepted it, he does not like it, fears it! But the anger lasted 4 years, 4 years is a lot of time lost when you look at the diagnosis. IT IS WONDERFUL TO HAVE HIM BACK!

My husband does not look the same anymore, but to me he is more beautiful than ever, we all have grown.

I have learned that even through "difficult times", many people, even strangers, can amaze me with their compassion, it seems that when rock bottom is so near somebody always is close by to lend a hand... Often time people you least expect as well, I call them ANGELS

Hopefully many angels will cross your path.

[CindyM]

I'm so sorry for just rambling on and on... I'm just really scared about getting my results back.

I hear you, Don. We are all scared a good deal of the time. I am scared for you and scared for me. Goes with the territory, I guess. It probably does not seem much like it right now, but you will cope with whatever they say it is that you have. And we will help in any way we can. Cindy

[Gina]

Hi Don,boy you are going through such a tough time.I cant imagine what it must be like to have such excrutiating pain and have to handle it yourself and then get up and go to work.My husband has als but thank god no pain!....Fear? oh yes and i can hear that in your voice or post.To have that pain and not know why or what the dx might be just is beyond my comprehension.I am hoping that it will be something treatable ...you are so young ...my heart is with you ...keep your chin up if you can and if you cant we are all here for you.....God bless ....Gina...p.s. isnt funny how familly dysfunction really shows itself at times like this...lol

[Icanmanz]

Hi, Don! I read your post. It was very touching. Please don't worry about all the rambling or whatever. That is why we are here to support you. You know when I read your post you reminded me so much of my son. You said you lost quite a bit of weight, so did he, but I always assured him that he still looked handsome. My son was a nice looking young man, but that darn illness took a toll on him. I just want to remember him the way he was before he got sick. Don, you Als people are still beautiful. Didn't you say that some of your relatives were shocked when they saw you? You see when we had get togethers I would call, and asked them to please be kind, and not to look at my son with pity, or shock. I always warned them ahead of time. They understood, and treated him no different. My son really liked that. Don, may God bless you, and I pray that he gives you courage to hang in there. I pray that it turns out to be something that can be treated. Hugs!!! God bless!

Irma

[AngelManFL]

Thank you so much to everyone, it such a wonderful feeling knowing I am not alone.. even a little hard to get used to it!! :) My Dr's office called me at 4:00pm yesterday to postpone my appoitment(9:15am today) for the second time because the 'small fiber blood test' result was not back yet from MA. Needless to say the disappointment and anxiety is just keeps on building... has anybody ever heard of such a test or even know what it is for??? Well, the good news is I only have to wait until Monday 12/3 - just one more weekend.. I better run, still at work.. Thank you again to all of for kindness and support - hopefully someday soon, I'll be be able to return it with a more positive outlook... chow for now....

[AngelManFL]

Forgive me if I sound angry but my frustration has reached it's limit. This Dr at ALS Clinic asked me to cancel my Appt at Mayo Clinic(11/29th), until I recieved his blood test reports back - originally scheduled to get the results on 11/26, they cancelled and had me scheduled for the 29th! then called the night before and said they still weren't in and scheduled for today to get the results. So I woke up this morning at 5am so I could be at work first - my Appt wasn't until 11:45am and then drive an hour and a half(no small task for me), thank God I brought my cousin with me, she also works for me.. He was very short and very brief to tell us all my test came back negative for all the obscure things he tested me for(like SMS Stiff-Man Syndrome) and that he's NOT going to give a diagnoses and that I need to go the MAYO CLINIC!!!! He did state that there is definitely NO PAIN associated with ALS. Of course we had many questions for him like what about when it starts in the spine and what about the EXTREME atrophy in my entire back - all of which he refused to respond to except for that I needed more extensive testing at a University Style setting such as the Mayo Clinic, I tried to explain to him that my lease is up 12/31 and that I'm my Mom's caregiver and that I have a business to run - I can't just not have food and that decisions had to be made soon so he said I should have a swallow study done but that the Mayo would handle it, said he wished me the best of luck and left the room. We were so stunned I guess we sat there too long and were asked to come out to the desk and pay our bill!!!!! I paid my bill, left and drove back to work to finish my day. So here I am laying in my bed alone still unable to eat solid food or swallow (over four months now) losing muscle and mass faster than I wish to admit and my spine feels like it is seperating.... So now I will have to wait another two months to get into the Mayo Clinic and I'm just terrified... I have no idea what to think or do... thnak youfo rlistening...

[Al]

Hi Don. Well at least we got your name changed. Don't know what to say about all the other stuff other than it sucks. I presume you get pain meds from your GP. D o they help?
AL.

[crystalkk]

Don,

I no you are in a great deal of pain, The als specialist would have gave you the ALS Dx if that is what he thought it was. He probably can't figure it out. So he is putting it on someone else they are great for that. I would call the Mayo clinic an explain the situation and see if they can get you in there sooner or call the dr that told you to cancel the appointment and ask him to call since it's his fault you lost your appointment. I bet he can get you in there alot faster. Don't you wish that you never told him you even had that appointment and went anyway. If not last resort call your Family dr you say he is really good and maybe he can call and explain the situation about your pain.

[crystalkk]

don,
One more thing,
How are your emg's and reflexes?

[AngelManFL]

AL, thank you so much for changing my screen name! "scared2late" was just too negative a conotation for me to handle and keep looking at... sincerely, thank you

My appointment at the Mayo Clinic in Jacksonville, FL is now set for January 21st, it's 5 1/2 weeks away and I have been waiting this long already... They were so kind on the phone about it all.. I told them what my Dr said at the ALS Clinic and how he just refused completely to go any further or answer a single question - even regarding a swallow study - (he clearly stated I needed one but refused to administer or set one up just kept saying the Mayo Clinic will take care of all that) and they said it is actually very common! No Dr wants to be the one to give a Dx and then be responsible if their wrong... She really helped me calm down and feel better, I guess I sort of understand the Dr's position - but he could of certainly handled it better than he did. When I left his office I felt utterly lost and helpless and even told him that while begging him for some type of answer to at least ONE of my questions and his only answer to ALL of them was "I can't give you a diagnoses, you need further examination at a Mayo type facility" he said that same reply over and over again to anything I asked or that my cousin asked (she actually got a little irate with him). He was like a completely different doctor then when I was there the first time. It was like he didn't want to touch me with a ten foot pole!! Actually that is about the same type of response I have received from almost every Dr I have seen in the past year, just thought and expected it would be different there.. So once again is time to forgive and forget and just keep going further, inch by inch maybe! but still further! My gp Dr has been so wonderful through out all this, I thank God for him. Someone asked about my EMG, and other test, the Dr only printed out his first findings and all the blood work results and handed them to me while denying my questions - unfortunately I didn't realize they weren't included in what he was giving me!! His initial findings letter mentioned all kinds of decreased things that I could never even try to begin to spell or understand - but I'm going to wait about 2 weeks and then request a full copy of my entire file so it should include absolutely everything including his dictation of our last visit (they have to provide all, it's the law in Florida). Trust me, I'll be here with a million and two million questions.. I really have to learn how to abbreviate really soon - is there some kind abbreviation dictionary or guide somewhere - it is difficult though after being an editor of documents half my life!!!! but I will learn :) it's just hard to keep up.. I think someone else asked about my pain meds - I certainly have them for night time, but the two that seem to help the most (Baclofen & Diazepam), I have to reduce to under half my dosage during the day because it clouds my thinking and makes me drowsy - and that is just not an option if I am going to continue running amd managing the ENTIRE business. Right now it is the ONLY thign I have to keep me going, my personal life no longer exist - my so-called 'friends' have dropped off like flies as soon as started using 2 canes and then just vanished after going into a wheelchair. My job has always the center of my life though, and now that I'm the leader of the family business (my Dad's job) it means the world to me, we were estranged for many years and we reconciled and became closer than I dreamt possible, he passed away four years ago and I started as a laborer and worked and learned everything from the bottom dredging in the mud of drilling foundations all the way to the top as CEO and CFO. I just couldn't imagine giving it up or putting it's fate in someone else's hands - it has taken years for my brother just to trust me with such responsibilities (he is 100% owner) - but I did it, and I did it well and helped build us to grow and begin to finally prosper and then 17 months ago all of this slowly started... I utterly refuse to go down without one heck of a fight!!!!! and in the same note I must sign off because I no longer have the strength to keep going or thinking(night meds). I have no words to express what it is like to be able to come here and just vent or tell my feelings or story or wwhateverer it is I am doing... Thank you all so much for providing this space/place to be able to share.. I promise to help support as long as I am abel, must say goodnight now... an thanks again, Don :oops:

[Gina]

So sorry Don for what you are having to endure right now...I know all too well what it is like to deal with the frustration of waiting and waiting and again waiting for apts.It took two long years for my husband to get a probable dx.of als...it was pure hell at times to have to wait.I wish that thier were some way to help you i can feel the anguish in your voice or post.....just wanted to say that i am thinking of you and praying that this will turn out to be something treatable.........Gina

[CindyM]

I have no words to express what it is like to be able to come here and just vent or tell my feelings or story or wwhateverer it is I am doing... Thank you all so much for providing this space/place to be able to share..

Thank you as well, Don. Vent anytime. Sometimes life is just too unfair - and to some very nice people, too! regards, Cindy

[AngelManFL]

Gina, thank you for your thoughts and prayers..

It is a better day today sorta.. at least emotionally.

[Al]

Hi Don. A funny thing happened on the way to the forum. Well not really. I was trying to move your post about the dry mouth and accidentally deleted the whole thing from everywhere. I'm really sorry. Could you repost it. there were a few replies to it. Sorry again.
AL.

[JAKE]

Al, I have scanned this forum over and over this morning for that dry mouth thread Don had posted last night and finally ran across your post just now. I was wondering for a while if I had lost my memory. :-D Thanks for easing my mind on that.

[AngelManFL]

I wish I had the strength to rewrite, but I just don't... Is there any way to recover it or does any have it that they could cut and paste it somehow???

[Al]

Sorry again Don. Just got off the phone from David and when I screw up I screw up big. Your thread is gone into the black hole of cyber space. I am truly sorry. I was just trying to merge the 2 threads because you had answers in 2 places. I think one of the threads had the delete box checked by default. I know to check them both now.
AL.

[AngelManFL]

I'm trying to focus on what I can do and not what I am losing... I refuse to let fear get a hold on me... I do appreciate your effort though and truly all that you do.
Thanks.

[Gina]

Hey Don , been thinking a lot about you lately and praying for you.Please check in and let us know what is happening with you?Everday i drive by a constrution place on my road makes me think of you and how you are doing??Hope things are looking up a little for you!This damn disease is so horrible i pray that you will have some peace in your life and will get a dx soon.....god bless .....Gina...[p.s] I remeber your last post.

[AngelManFL]

Thank you Gina, your thoughts and prayers are very much appreciated - beyond what I am able to express in words... the anxiety and frustration can be so overwhelming some days... but I have strong responsibilities due to my Mom and my brother's business.. I could never abandom them.. I just pray every morning to God for the strength to get out of this bed and get up and get myself to work... it can be very difficult because as soon as I get there I've got ten people needing me to sign here, approve this, check this and so and so on everyday... Please believe me - I am not complaing about this. there was a time not too long ago where this is exactly why I love what I do... and is kind of a part of what makes me continue to fight so hard to find answers. I fought so hard to get where I am today that I refuse to let this illness take it all away.. and in the same breath it can be so difficult to find that strength to keep up the fight... I hate this cycle and this illness so much! It is stealing my very fiber of who I am - and doing it very slowly and it hate it... sorry if this sounds so angry tonight.. my 8 yr old niece had a play this morning that I was so late getting there that it had just ended when I arrived.. God please her she still came running into my arms to hug me... It is just so frustrating - and cause me so much anguish at times.. It has just been a rough day... Please forgive me if I sound whiney....

Thank you..

[Clbrink]

Don,

You said this illness was, "stealing my very fibre of who I am", it will test you, run you through a myriad of emotions, but your mind and the essence of who you are will most likely never be taken by this illness! That is a battle you will win!

You sound to me like a very grateful, caring and sharing man, that is why your niece understood, and was happy to see you, she knew your intentions! Children are amazing, they see so much more than we do! and it is simplified!

I hope your today is a better day for you!

Tina

PS: I don't think they(Forum) have put a limit on "sounding whiney"(as you put it), but I think they should put a limit on apologizing for it! :) You shouldn't have to apologize! and I wouldn't call it whining!

[CindyM]

Good answer, Cbrink. I figure everybody is entitled to a bad day now and then. If members find they are overwhelmed with these feelings, we always have our in-house gurus to look to.

[Gina]

Hi Don,so nice to hear from you again..8 yr olds are the best they give unconditional love and are still not afraid to show thier emotions.Sounds like she loves you very much and you her.You have every right to feel what you feel and i understand.ALL of the emotions you are going through are perfectly normal and healthy reactions to what is happening in your life.Ive often felt like i was on a roller coaster or emotions with no way in sight to get off.Unfortunetly our lives have all changed and the losses are countless and those you must grieve to get through...dammit i hate this for you and i hate it for me and my husband and everybody on this forum going through similar anguish.You sound like such a strong spirited person with a lot of pride.What you have accomplished with your business shows just how much dedication you put into something you love.I pray that you will be able to hang on to that and also use that same dedication and strength to fight this damn illness that is plaqueing you.........God Bless Gina

[AngelManFL]

Sorry, I could not reply yesterday - it was a very bad day physically, unable to get out of bed.. But I am up early this morning and pray it will be a stronger and brighter day. Today I should find out if they are able to move up Mayo Clinic Appt, keep your fingers crossed.

Thank you so much for words of encouragement and words of love and understanding that truly I am only able to find here. I thank God everyday for this site and all of you here - those who are not going through this directly just can't comprehend the challanges, changes and everything else when facing what we go through on a daily bases.. I truly don't have the right words to express my personal gratitude for your support and what it means to me. Just knowing your there and "get it" when talking about the true feelings and emotions that we face everyday...

Thank you, and I pray we all have blessed and better day than the one before.. :-D

[Icanmanz]

Don, good luck, and God bless! Sorry about the kind of day you had Sunday. I pray that God gives you better days!

Irma

[CindyM]

I truly don't have the right words to express my personal gratitude for your support and what it means to me.

It takes a good community like this one to provide the kind of support PALS and CALS need. Those of us who staff the forum do not volunteer our time in order to get the thanks but your gratitude is really appreciated.

Hope tomorrow goes better for you, Don. Cordially, Cindy

[Gina]

I would like to second that Cindy you and the other moderaters are to be commended for the work you put into this site.It has become a second home to me and their are days that im sure i would not get through if it werent for this forum and the special people on here.......thankyou and God BLess ....Gina

[Lorie]

You Vent Don! Besides we are probably the only people that will listen, Because we know very well and Care, I might add!

Lorie:-D

[hboyajian]

Hi Don, I'm sorry I didn't see your question to me about back braces until now. I am trying to remember what the brands were. I think one was called Headmaster, basically a curved piece that fit between the chin and upper chest, and the other something like Spinal Support, which had a frame in the back and strapped around the chest and forehead. My mom gave these to a local nursing home immediately after my dad died a year ago, along with their instruction manuals or I would send them to you. My dad got prescriptions for these from his doctor and he purchased them from a medical supply company. I was amazed at how expensive they were. Medical insurance only paid for a percentage. I'd have to say neither one worked very well, as both put pressure on tender spots and became painful after being worn for a time. One of the members here created a neck brace with pieces of foam that you might find more comfortable. Instructions and photos are in another thread. If you do a search for neck braces, I'm sure you will find it Hope this helps. Holly

[AngelManFL]

Thank you Holly and Gina and Cindy and AL and to everyone...

Another rough day has passed and I do not recognize the person I see in the mirror anymore. Not just physically but in every way imaginable. I was once that big humble guy that had that bright light in my eyes, who always had a smile on my face and people would tell me I could light up room just by walking into it... I'm so tired now of being in so much pain and feeling so much gloom - I seemed to have somehow lost my way... I'm sorry to whine so much lately, but I'm lying here in my bed unable to stop crying - knowing that the light in my eyes is gone and bring a cloud of sadness around me every where I go. I am trying so hard to stay positive and keep a good attitude but lately it has just not been easy... The pain and weakness of this disease is taking a much bigger toll on me then I ever thought possible... My mother is very sick - she lives in my home because I am supposed to be taking care of her... I am just not able. I know that it is probably my pride as a man causing all these feelings - but my God - I will be 40 in May and here I am crying, in unspeakable pain along spine, unable to walk, barely able to work, and everyday gets just a little bit worse than the day before. Where is that man who I used to be? If I could just have a least one good or slightly better day maybe it will get better... I can't stand being this person I seem to becoming.. it is against every fiber of my soul, but I just can't be able to prevent it.. I know this sounds like a pity party and in all honesty it probably is. Will it get better? Does this process ever go into recess, even if for just a little while so I can catch breath? Will there ever be another 'good' or even 'better' day? I'ld even settle for a couple of hours (that I am not sleeping or unconcious). I was so happy and was once that person that happiness into others lives (I truly felt it was my calling - not duty - it justcame natural). I miss who I was so much and hate so much who and where I am right now.. I do not feel like that man anymore... Please please pray for me - I'm sorry and I know that sounds and is selfish, but I desperately need to find just a little bit of light to keep me going.. It is late and I must sign off.. I thank God for all of you and to those who run amd moderate this site to allow me to express and vent and just cry when it is truly needed, forgive my rambling... God bless all of you.

[CindyM]

I hope today goes a bit better, Don. I am confident you will get back that light in your eyes. We have PALS on this forum who have had ALS for years and from what they say the sadness does go away. Give yourself time and do a little small something special for yourself every day. Cindy

[Icanmanz]

Don, hi there, dear! I just read your post. I read some last night, and I just cannot see where or how I missed your post, anyway I am pleased I found it. First let me tell you Don, please don't call yoursel a whiner. You are not one, what I see is a courageous young man fighting this damn disease. I detest this disease, too. The sad part is that there still is no cure, and folks are coming into this forum every day, besides the ones that have departed. Please, this is not a pity party! You only want back the strong, young person you used to be, and I really cannot blame you for that. I cannot, for the life of me, cannot see why good folks are put through these terrible test.. The worst part is that it is happening to a lot of good folks, with a kind heart! Why? This has been my question since I was introduced to this "Demon."

I will certaily be praying for you, dear! Every night when I go to bed I pray for my little, new found family (our forum) sometimes I turn up with names, Don I am adding you to the list! Keep us posted, my friend. God will be on your side. The only thing you can do is take it one day at a time, talk to Him every second of the day. He will not walk away from you! May God bless you.

Irma

[AngelManFL]

This is my original post and seems very long compared to others... Am I supposed to start a new one if I have a new question? Is there a place to look up such rules or proper etiquet?

Irma, Holly, Lorie and Gina - your words of kindness once again lift my heart and soul from a very dismal place... thank you for your prayers and support. I just can't imagine how you keep up your strength while some still caring for your loved ones and some grieving and yet able to still support and give thoughts and prayers in the midst of what you are facing on a daily basis. You are all incredibly courageous and strong woman.

This week has been incredibly difficult to get through.. My breathing issues are getting much more difficult every night that goes by. How does one get a BiPap machine? Do I need to see a pulmonary Dr? My Gp said he honestly didn't know... He is a wonderful and caring doctor and I could not have been able to get through all this without him, but he is honest enough to me to tell me that is just at his wits end and he feels personally horrible that he is unable to help me and that all th e specialist I have seen don't want to touch me with a ten foot pole nevermind give me an actual Dx.. He prescribed Salagen 5mg to me today to take at bedtime to try and help me with the dry throat and mouth - almost called 911 this morning because I had such a hard time getting my tongue off the side of my throat so I could swallow the clorasceptic spray as it slowly trickled down my throat and tongue - I have to spray on both of the sides of cheeks so it slowly causes a little saliva and moisture to loosen my tongue up enough just so I can close off my throat and be able to breathe thru my nose enough to swallow a little at first - and finally be able to breathe normally. It was like my jaw and tongue just hung to the left enough to close off the left air passageway - it felt like there was just this stuck open passage to just my right lung and my breathing was very slow and labored - I could barely stay concious to even call someone for help, not even enough to be afraid! until about the fourth time I woke - the fear kicked in and the adrenalin allowed me to reach for the spray and start the process of spraying as described above... I was FIVE hours late for work and had to go in and sign the checks!!!
Every morning has been somewhat the same until this morning - this morning my I couldn't breathe and once my tongue was somewhat loose and I could get to my bathroom - My tongue was so swollen it barely fit in my teeth, so I took a picture of it in the mirror and brought to my Gp thus he Rx'd the Salagen... Has anyone had anything remotely similar like this? I am truly afraid I will not wake up one morning due to the fact it happens so slowly throughout the night and I am not getting enough oxygen to be conciously aware of it. Honestly any information on how to obtain a BiPap or any advise at all would be greatly appreciated... I am beginning to fear I will be one of those who advance quickly and won't be here much longer... All things are pointing in that direction and I guess honestly they have for awhile now... Is this something I am just to accept and make arrangements - or wait until Jan 21st when I go the Mayo Clinic for a week?!?!? praying I make to Jan 21st...
I am afraid for my mother and my business...

Goodnight my friends - I truly have no idea what I would do without you all...

[Icanmanz]

Hi, Don! I just read your entire post. I am not lying, it hurt me deeply. This disease is "hell." How horrific to imagine going through this day after day. About the Bipap, have you talked to your doc or caseworker. They have these loaner closets, and you can get whatever you need. I pray to God that you will find some relief. Oh God, am I ever going to be praying for you. Another thing Don, I can see you being worried about your mom, because I know you love her, and you do not want to see her suffer. It is hard on us mommies, but He (our Father) will comfort us. Okay, I am not finished yet, your mom part I can understand, but your business, I would not worry about it. I used to tell my son not to let his inability to work get to him, there comes a time when you can no longer perform. It is sad, but it is one of the sad facts we have to accept. May God bless you. Try to live your life to the fullest close to your loved ones! Prayers!

Irma

[Thumbs Up]

Hi Irma, you always find the right things to say. God bless you. PALS & CALS are certainly lucky to have you and all the others on this forum. God bless you all. I think I am going to answer a post and then I see all of you jumping and he seem to say it all. Norma

[AngelManFL]

Irma you are such a bright light to me.. thank you for your prayers.

I think I will call my local group here and inquire about their 'closet', my Dr truly doesn't want me to see any more specialist here locally until I go to the Mayo clinic.. They have a bad habit of thinking they know the answers and fill me with all kinds of hope - only to crush my heart and completely abandon my case (unethical in my opinion). They all say my case is too complicated and "I need further study" at the Mayo... I made through another rough night, haven't noticed the new med(Salogen) to be helping yet - but he said it may take awhile. It is just so fearful waking up... My mother I know others in my family will take care of her - but the business is my only source of income to take care both us and my insurance.. nevermind the business belongs to my brother! and that is how I take care of him.. My position is everything unfortunately - I have been trying to teach several people to take over many of routine tasks (payroll, accounting, bookkeeping, estimates, invoices and things of that nature) but it is impossible to teach someone to "lead"... and to care about the business in the way I do. I love my brother with all my heart - but he is just not able to this.. before I took over my father was the leader and Rick spent 28 years out in the field.. you really can't teach a gruff 'old school' construction man to be a leader of a corporation.. he doesn't haven't the slightest clue how to be an "employer" - even though he is the owner... I guess I should probably try to find just the right Controller that could put up with his gruff exterior, but that will be no small task!! And that would truly mean I would have to stop working also.. it is a viscous cycle of emotions for me.. In order to do the right thing I would have to give up the only thing keeping me going.. My work is what gives me the fight to get out of this bed everyday and I force myself to do it - I know this is definitely hurting me more now than it is helping me(physically).. like I said it is a vicous cycle... I know in my heart it is time to hire someone so I have time to instill in that person the level of care it takes so I know my brother will be alright.. but that also means I would have to give in to this illness the biggest part of my life as I know it... it may be necessary - but I hate the thought of it. Then what lies ahead of me? Disability? Medicare? Moving somewhere alone or into a 'facility'??? You are very right about one thing Irma, I hate this disease and everything it entails and steals from us...

Thank you again for allowing me to vent my thoughts and my fears - without all of you here - it would just bottle up inside me unspoken and cause even further damage!! I am so grateful for all of you - please forgive me for mispellings and missing words... you ALL are like my second(or even first) family...

[Thumbs Up]

Please don't ever give up, fight with all of your might. Norma

[AngelManFL]

Please don't ever give up, fight with all of your might. Norma

I'll never stop fighting for my life - it is my job and working that I was referring to - when do know when the right time is? and do you do what is better for myself or better for my business....

[Clbrink]

Always Do What Is Best For Yourself!

as long as it hurts nobody else!

[AngelManFL]

First of all THANK YOU to everyone who has provided so much comfort, guidance and all the things that only all of you could provide.

I had a posting on 'Breathing Issues' that got lost in cyberspace - but here is short synopsis: Every morning I wake with my throat, tongue and mouth completely void of moisture. When I awake I am unable to move my tongue or close of the airway in order to swallow or breathe thru my nose - it is like a direct opening to my lungs that I am unable to close off. I spray clorasceptic on the sides of my cheeks until reaches the base of my tongue and I am slowly able to get my tongue unstuck from the side of my throat. I am calm about this somewhat now (meaning I don't panic), but when this started about eight weeks ago it was the most frightening and painful experience of my life and basically is every morning. My GP last week Rx'd Salogen in the hopes it would increase the saliva in mouth and help prevent the complete dryness. Well it did, but due to the fact my tongue is unable to swallow it - that opening to lungs has given me "sorta" like pnuemonia!! 'sorta' was my GP word... I saw him today. I am scheduled to see a pulmonary Dr in the morning, lets hope it goes well.

Ver tired tonight, but wanted ti give an update.. goodnight friends.

[Gina]

Hi Don!I was just reading over your last few posts and i must admit that the very fact that your are suffering so very much really @!#@#$ me off...What the hell is going on with our Medical system!Thier is no way in this world that anyone should have to endure what you are going through without any immediate relief from one of these so called specialists!I am hoping and praying that when you see the pulmonary dr. tomorrow that he will have some answers for you.Im not sure but i think he or she may be able to supply you with a script for a bi-pap!!.....Is the mayo clinic a teaching hospital?In Canada if you go to the emerg. of a teaching hospital they have to admit you and keep you thier till they find out what is wrong with you!Not sure if it is the same in the states but might be worth checking into.......praying for you and Good luck tom....
Gina

[AngelManFL]

Gina,

Unfortunately that is not the case here in the States... It is my own opinion, that what I am going through is utterly inhumane. But down here this is how the systems works unfortunately. The first 38 years of my life I would have told anyone we had the best medical care in the world... I've only heard of a few cases here and there that were like mine on the news... I pray that today the pulmonary Dr can help get me through until my appt at the Mayo(Jan 21st)... I also pray everyday and night that I will reach my 40th birthday - May 1st... but find it more and more difficult to believe with each day that passes. I haven't been able to eat since early Sept, I've been in a wheelchair since May and now I fear every morning I will not wake up.. Thank you for well wishes and prayers...

[Icanmanz]

Gee, thanks a million Thumbs! I try to be here, trying not to overdo it, but if I can be of some help, I don't mind at all. Sometimes it brings tears to my eyes, but it's okay. I have learned one thing from this, that it is alright to cry, it brings relief. You can only cry so much, and then all of a sudden I ask myself, "Why am I doing this?" As a matter of fact, no later than last night, I was sitting in front of my computer, then I felt sad all of a sudden, the tears started coming out. I got up, went to my room, went through some old letters and pictures, prayed a little afterwards, and guess what? I regained my composure. I do not know where all of these ideas come from. Thumbs, you have a great day, and God bless us all!

Irma

[Icanmanz]

Don, hi! I was thinking about you this morning as I turned on my computer. I was hoping that you"d be having a comfortable day. I just don't know what words to use, I am so afraid that I am going to hurt feelings out there, but sauch are not my intentions! I read your post, and it saddened me. I wish there was something that we could do to help you feel better. but can only pray to God, and as Him to step in. May God help you in many ways. My friend, I am going to be off the computer for a while, but I will check on you guys later. I have to go into town, and pay bills (argh)! God bless!

Irma

[Gina]

Don, i am also thinking and praying for you today....hoping that you will find some answers and relief !!!!!!!!
Irma you are such a kind and caring angel in this forum and i cant imagine you ever hurting anyones feelings and if by the very slightest chance that you ever did Im sure anyone whom had ever talked to you
or read your posts would realize that your intentions are always the best!................................... ....................
Don please let us know what happens today we are all so concerned and pulling for you!!..God Bless...Gina

[AngelManFL]

Irma,

I don't know who "Thumbs" is, but I can tell you that your post are most valued and precious and I would imagine everyone on this forum feels the same way. You always bring love and light with every word you say and post. You remind me that God is still watching over me even in the darkest of moments and when I feel I can on no further, your words of love and compassion can shine God's love right back in to my heart and in my spirit, they give me courage and strength. You could NEVER over do it, just knowing your out there and praying for me and the rest of us here on this forum - that alone gives me strength! Don't ever let anyone ever make you think or feel anything different. You are God's blessing to us! May God lift your spirits today and fill you with His love and understanding, only like He can.

[AngelManFL]

I saw the Pulmonary Dr today and I guess it sorta went well. I am scheduled to have a sleep study done on 12/28 to firgure which machine they will want me to use: a C-Pap or a BiPap.. not real sure why when he clearly said he thought I needed a BiPap, he said the insurance companies require the sleep study before paying for the machine. The politics of medicine is very frustrating - but what can I do? Nothing. He did a test on my breathing capacity and said it was quite poor, just barely 41% after seven tries 41% was my best... Does any know what any of these numbers means. I felt reluctant to ask to many questions, he squeezed me in after my Gp called him yesterday, but he did say after the study results he go over it all throroughly with me.. So I feel a little better that at least something is moving forward..

Special thank you's to Gina and Irma for providing so much support and especially to CindyM - thank you for taking your time in our PM's to explain and help me. You all have become such an important part of my life and helping me get through all of this... this forum is just such a Godsend, and will continue to support you as ;ong as i am able. Goodnight my precious friends..

[Gina]

Oh Don thak GOD your visit with the pulmoray dr. went well!!!!!It is about damn time someone noticed what distress you are in!!!Im praying that the wait will not be too hard on you and that everyones prayers will see you through!You sound like a fighter to me so i know that you can do it...so glad help is on the way for you....not quite quick enough for my likeing but i know what you mean by the politics of medicine!!!!!hugs and prayer for you !!!!

[Icanmanz]

Bless your heart, Don. You must really be tired because you are going to bed so early. This damn disease really drains you, huh? Gee Don, I wish I could help you, but I really don't know much about the sleep study. I will be praying that God answers all your questions. Thank God your visit with the pulmonary doc went well. Am sending lots pf prayers your way!

Irma