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AngelManFL

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98
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11/2007
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FL
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Tampa Bay Area
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

Senior member
Joined
Nov 9, 2006
Messages
642
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PALS
Diagnosis
11/2006
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State
NY
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Albany
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

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Joined
Feb 22, 2007
Messages
672
Reason
PALS
Diagnosis
02/2007
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US
State
PA
City
McEwensville
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.
 

comfortable with ALS

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mi
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st.clair shores
hello

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

Distinguished member
Joined
Nov 5, 2006
Messages
414
Reason
PALS
Diagnosis
10/2006
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US
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Michigan
City
Flint
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/defaul...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

Active member
Joined
Sep 30, 2007
Messages
98
Diagnosis
11/2007
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US
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FL
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Tampa Bay Area
Thank you to all..

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

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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

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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

Member
Joined
Sep 11, 2007
Messages
19
Reason
PALS
Diagnosis
10/2004
Country
US
State
California
City
Carlsbad
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

Active member
Joined
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Messages
98
Diagnosis
11/2007
Country
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Tampa Bay Area
Thank you all for your encouragement, itis wonderful to converse with someone who "knows" the emotions and frustrations of this process....
 

AngelManFL

Active member
Joined
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Messages
98
Diagnosis
11/2007
Country
US
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FL
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Tampa Bay Area
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

[email protected]

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

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

AngelManFL

Active member
Joined
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Messages
98
Diagnosis
11/2007
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US
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FL
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Tampa Bay Area
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

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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

Member
Joined
Sep 11, 2007
Messages
19
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PALS
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10/2004
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US
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California
City
Carlsbad
Don,

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

John
 
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