AngelManFL Update

[AngelManFL]

I wish I had the words, I am very sorry for staying silent for so long... I just had so much hope before going to the Mayo Clinic, and now I have none. The entire experience so just so awful and so not what we expected. They see 2000 new patients everyday, it is a very well oiled machine and they move people around like cattle with great efficiency. I have traveled there seven times now and will never return, have spent countless of thousands of dollars and beleive it or not I have no diagnosis and no treatment plan. My uncle went with me each trip and to every appointment, the last was with the Director of Nuerology, he sat there with a straight face and told us they had no Dx and no treatment plan. I left there just devastated, that was just last week on Tues 4/23 at 7am, we left that day right after the appt and will never go back. My Dr. here at home when I saw him before that last trip was so disgusted with reports and lack of concern for well being, he promised that no matter happened at the last appt he would do something to help me. I pray that he meant it. As for me, I have lost ten more pounds, my ability to coordinate my fingers is very difficult, and my window of functioning during the day is getting smaller and smaller. I am truly scared now, and see no hope in the future. I meet with my locak gp on monday. My mom is currently in hospital, kidneys go bad and she has difficulty keeping her balance, severe anemia - her red blood cells are not producing, her blood is just out of wack and she is being kinda difficult. I am just withering away, I still work about 5 hours a day - not enough, but I all I can handle. My back muscles are almost completely gone. I just so desperately want my life back, but honestly do not ever see that happening. Please forgive me for sounding so negative - it is the reason for my silence. This site for should be a place for hope. I think of you often and pray for you all daily,, Gina, Pat, Al, crystal and all of you who have come to be a part of me. I just pray that my gp will keep his word and find me help, will find out tomorrow I guess. I'm very tired and most rest now. Farewell for now and God bless.

[crystalkk]

don,
I can understand your frustration, you have alot going on. You are in my prayers, I have been thinking about you everyday
wondering if you were getting any answers. What exactly did they do while you were there? Did they emg your back....
If so what did they say. You are very lucky to have a good gp that is going to do whatever he can to find you help.
I will be praying for your mom also.

[MtPockets]

Don, I am so sorry for the experience you have been put through. Please feel free to vent, rant or whatever you want to call it here on the forum. We have all been in the same boat. You are not alone in this fight my friend.

Last night was another of those bad nights with only 2 hours sleep. A few tears, lots of pain, and sadness.

I know it helps me to let it all out here every now and then, and the support comes rolling in to help share the load. To give you an example so you do not feel alone:

Here is a rant of mine from the past.

Fact verses fiction: When someone ask you, "How are you doing"?

THOUGHT: Sure I'm dying but everything is fine, wonderful, just great how about you. Ever feel like telling someone that or worse? Don't answer.

I know how you feel. We all go through this. Some get mad at the world, God, friends, family , everybody and just make themselves a pain in the butt basically. You get to chose how YOU will react. Yes it is a choice.

I usually try to put on my "I'm OK your OK face" when around others. I try as much as possible considering all that may be happening to have a positive approach and outlook to live every day to it's fullest. And it's amazing how many people believe I'm doing great, when inside I'm ????. It changes all the time. Some days I do not know from one minute to the next how I'm dealing with this, it's overwhelming.

I do that mostly to help my loved ones, to be a source of hope for others, yet like tonight I can't sleep because of pain, spasms, and having a pity party, but no one came to the party.

Well maybe God. I think he understands when I get in these moods, swings, bad times, and just have to let it out and vent. I laid in bed crying for awhile, but could not sleep so got on-line instead.

But somewhere deep in my heart I know God loves me and you, and this will work out, I will make it through with God's help and strength. After it is all over I will be with him forever, no pain, no fears, no mood swings, no spasms, no pills, finally complete PEACE, believe me it will be worth it all, to finally see my lost loved ones and walk in the presence of Jesus Christ.

That is my rock that I hold onto, to get thru the lows, and to make me truly believe I WILL BE ALRIGHT THIS DAY. Not tomorrow, next week, next month, just this day.

I can only live ONE DAY at a time and make the absolute most of that day to help myself and others. There is no second trip around. This is it folks.

Do you have anything to use as your rock? Your strength? To get you through this.

Have you given thought to how God fits into your life? Now might be a very good time. You have some time left to consider it, before it's too late. Please, I'm serious, God really does love you and He said if anyone comes to me I will in no way cast them out. I respect your choice, but remember you will live with it forever.

I feel your pain, may God Bless and keep you.
AL

[Al]

Hey Don. Sorry things went so crappy for you. Try not to give up. I know it's hard. I had a fall this week and the OT wants us to use the Hoyer lift at all times now. I'm on Lithium but have deteriorated and Lee and my daughter (nurse) think I should quit it. At least I have a diagnosis though and got it from the first Neuro I saw and then confirmed by a few others. Frustrations are a daily part of MND's. Try to roll with the punches.

Sorry you're not having a better time of it too Al. Now I know what you meant by the joke reply.
AL

[AngelManFL]

Thank you Crystal, Al & Al.

A little good news, my has been released from the hospital and she is staying with her sister for a little while. She meets with her Dr tomorrow to get news of the testing they did. Crystal, to answer your questions, they did do an emg - it took all of ten minutes and yes I had to beg her to please test my back - so she obliged and did one spot. She things were a little slow, but I was just fine. They did a swallow study which afterwords I met with a 'Speech Therapist' who said evrything was great! I said what about when I aspirate on water? she said it was fine, drink slow and carefully! I asked her what about the fact that I can't feel it on the left side - she "Oh, that's interesting, you try to have a good day" and we left her office!!!! I thought my uncle was going to lose - his - mind. They 18 x-rays of spine?!?!?!?! My PSA was 2.5 so they did TEN BIOPSIES!!!!! Of course they were just fine - "it must be from sitting in the wheelchair at all times" - I said 'yeah no s#$%!!!!!!!!!!!" There was not a single Dr "overseeing" me or even cared what my name was - I was a "Clinic Number" - it was just from one test to the next, and that test would spawn another test and so on. All of course would be two or three weeks apart - thus the seven 600+ mile trips, each at 260 dollars a night - twice I was there for a week because it was cheaper to stay than go home just to come back the next day! I will never understand until the day I am dead how they as Doctors can sleep at night - especially the last one I saw as I sat there in tears begging him to not give up on me and "I'm sorry we just don't have don't Dx or a treatment plan for you" - like it was something he said every day - which he just might - but this my LIFE - MY DX and MY TREATMENT PLAN HE WAS JUST DISMISSING LIKE IT DIDN'T MATTER!! now I'm all worked up and having trouble breathing... sorry to end on a bad note - but must restnow, God bless.

[CindyM]

Don- I do not know what to say. I am sorry they cannot help you more. :cry: Cindy

[AngelManFL]

Thank you Cindy, right now I'm really on the edge of losing it... If it were not for my Mom and the fact I work for my brother I honestly do not believe I take another day... But I have to trust God and pray that somehow He will use this for his good and I have to try not to be selfish. I'm at my office so I have to be brief - but I feel so lost and so alone and so helpless.. I met with my Dr on Monday because I made the decision to try and get off all of these narcotics - my thought is that may be masking something and my Dr agrees. He is making me take it really slow which probably is wise, but it is the best idea we could come up with - not even sure if it will be possible but I have to do something. I will try this on my own first, my doc thinks it might not be possible due to how long I have been on them(15 months). It seems almost impossible to believe that only 18 months ago I stood six feet tall, weighed 210 lbs of solid muscle and was in perfect health... now I'm wheelchair bound unable to get one foot in front of the other and weigh only 148 lbs... My hand-arm coordination seems to be degressing now too.. But according to the "Mayo Wonders" I'm seem just fine. I will send them a letter and try to be professional and just state the facts without my emotions seeping through, because it just doesn't seem right or ethical to what we experienced up there. My family is outraged, especially my Uncle who witnessed it all - but I want to try and handle it properly so maybe they might still be able to help me - or at the very least not treat there patients like cattle. I must get back to work now - I truly feel sick inside my heart and really need you all more than ever. You are the only ones I can truly speak honestly to - to my family I am supposed to be there rock and they all lean on me... If I speak even the slightest negative peep they jump all over me, so I just hold inside and try to trust God - but that can be very difficult at times, as I am sure you all are very aware... God Bless. Don

[MtPockets]

Don, Don, Don, I can so identify with what you are going through. My son is an emergency room Physician, and many Doctors are JERKS. I would be scared to stand in their shoes at Judgment day. I feel your frustration my friend.

I am currently reducing my pain meds gradually. I have been on narcotics, Lortabs, Demerol, Duragesic patches, etc. for over 18 years due to chronic low back pain from a spinal injury I received from a airplane accident.

They recently had me on hospice for 45 days to deal with the increase in pain. I fired them after 45 days. For some reason I was having terrible leg pain at night and could not sleep. So they drugged me to sleep. That is no way to live. They wanted me to spend my life in bed drugged up until the end. Heck the end would come a lot quicker that way. I'm too much of a fighter to lay down and play dead. I'm going to go out preaching and praying until my last breath, God willing.

I replaced my mattress with one of the memory foam adjustable beds. Since then the pain has gradually eased off in my legs, but the sciatic pain still is there. So I am not taking any of the other pain meds now except the Lortabs for the back pain, and I am trying to reduce that to nothing.

My thought process is a lot clearer now, and I feel more like I am living each day instead of just existing. The withdrawal period was something to deal with, but it soon passed. I encourage you to do what feels right for your body. I will be holding you up in prayer through this ordeal.

[Icanmanz]

Hi Don! I have been offline myself, for hmmmm, a week! Something went wrong with my computer, darn viruses. Took it to the shop, and the man that worked on it was so nice, thank God. I told him he was never losing me as a customer. Such an honest person, it's hard to run into those nowadays!
Don, your post caught my eye, even if it was a little lengthy (forgive me! LOL) I read the whole thing. I am soooo sorry to hear about what you are going through with those people at Mayo. People can be so heartless, why are they even doctors? You have no dx, they have nothing else to tell you, so what are you to do now? Who are you going to turn to other than your gp? Does your gp know about neurological (sp?) issues to the fullest? Can he handle whatever is wrong with you? Are you having problems with your speech as well? This is so wrong? Have you contacted Alsa? Or do you have to be dx'ed before Alsa responds? I wish I knew what to tell you, but I am out of words. All I can do is pray you will find help.
Keep us posted Don. I will certainly keep your mom in my prayers. Take care, and God bless, friend!

Irma

[AngelManFL]

Thank you Al and Irma, all I can do is take one day at a time.. I have so much frustration inside me and please forgive me if my post sound angry - but they truly are. ALSA is not able to step in without a DX.. Right now I am just trying to get through today.

[crystalkk]

Don, you have every right to be angry! We are here for you and praying you get answers.

[MtPockets]

AngelManFL, Hey my friend let it all out. Better to vent your frustrations than to get an ulcer on top of it all. We understand believe me.

Irma, I know what you are going through with that computer. I have had to reformat my hard drive twice so far this year thanks to some knucklehead sending me a virus.

I always have the top of the line virus software and firewall running, yet they seem to get through. The last one tricked me real good. A pop up window came on my task bar that said I needed to update my anti virus program and to click it. So I did.

Big mistake, it loaded the virus, not my virus program update. So from now on I will only go into the actual virus program to do any updates. They are tricky little bugger's.

[givenin]

AngelManFl I am also sorry for your treatment and hope you can rise above their insenitive attitude.

Al I agree with your wife and daughter please stop taking the Lithium, wean yourself off it. I have been thinking so much on the last months of my husbands life and I honestly beleive that it made things worse. I reported his symtoms to the Clinic and there was not much said because nobody knows for sure what will be with it. My husband was progressing pretty steady all along but when he started with the Lithium things speeded up. After talking with my Doctor she said I should speak up all info should be given good and bad.

Lithium was the only hope my husband had to slow down the progression and he had such high hopes and then about a week and a half after he started he became more afraid, swollen ankles very hot and cold the cold more than it had ever been like blocks of ice, his speech we were not able to understand and we were using the Hover lift, he couldn't eat but would force himself but still lost weight, drinking became even worse, dry eyes watery eyes not able to sleep, his breathing became more shallow. Some of these things were around already most came on after the start of the drug.
Maybe he was to far along to try Lithium I don't know but I do know it made things worse.

Sorry this may not be the place to rant on this but your remark got to me Al.
We have also lost another Pal here, Richard went to the full end of the road and is suffering no more.

Cheryl

[Icanmanz]

Al, I Had my computer reformatted about a month ago, and then this happened. I am always very careful, try to be, anyway. This last time my husband was on the computer when it started going crazy. Hopefully it's fixed. So far so good! Okay, I'm out! Have a nice weekend. I am spending the night at my son's Shannon tonite, just to get away. God bless!

Irma

[AngelManFL]

It is odd you have been talking about comp issues - I just tried to post and it failed.. it is probably a good thing - it was too long and too depressing anyway.. just having a really hard emotional day.. just can't stop the tears.. God bless.

[Gina]

Oh Don, i am so very glad to hear that you are posting again.My heart is just breaking for you.Please dont give up hope i just wish thier were some words of wisdom i had to offer you but i feel so totally inadequate.All I can do is tell you how much we all love you and are praying for a light at the end of the tunnel.I am so saddened by the lack of sensitivity by the people who are supposed to be helping you. You are such a courageous and caring man.You and your Dear Mother are in my prayers!.........Bless you my Angelman!...Gina

[CindyM]

Nice to hear from you again, Gina. Hope things are going well...

[dona jean]

hi don
i am so sorry for all your troubles, you definately been through the ringer.
nothing for nothing, try a different clinic, like univ. of miami, where they actually
do als research. you may find it to be a better experience.
i feel your pain, and pray for you. don't give up the fight!
dona

[AngelManFL]

Thank you Dona, I am very much considering going somewhere else - just do not know where to go.. there is a Moffitt Center in Tampa, FL which is very near to me, but I do not know if they see cases like mine - I think they specialize in cancer - but I will try and look into it. I'm hoping my Doc will help me - ther are many test the Mayo never did - such as muscle tissue or bone marrow samples - so I am still not going to give up, or at least I should be honest and say I am trying my hardest not to.

Gina, there is not a day that goes by that I do not think of you and swmn.. I hope and pray that you are well and that your pain is easing and the healing in your heart is beginning. I have missed you terribly and pray for you often. Please forgive me for being absent for so long - I was just lost in a very bad place and still struggling daily to stay positive - I'm quite sure you understand, it is a moment by moment and hour by hour and day by day struggle. God will help get us all through these times of pain and anguish if we only we focus on Him and trust in Him. Easier said then done of course! It is so wonderful to hear from you again. God bless you my friend.

Goodnight all.

[Icanmanz]

Hi Don! So nice to hear from you. I pray to God you will find a place where they will have the right doctors for your illness. We haven't given up at this end, still praying for you. God bless!

Irma

[MtPockets]

Hi AngelManFL,
With a name like that you have to make it. OK? Here is a small guar4ding angel to help comfort you this day. Remember,
Psalm 34:7, The angel of the LORD encampeth round about them that fear him, and delivereth them."
http://i160.photobucket.com/albums/t172/ShakeyMarble/Animations/Angels.gif

[AngelManFL]

Thank you Irma and Capt Al,

Today has been a rough one, was not able to get out of bed, missed work.. Hopefully tomorrow will bring more strength and less pain. This is actually the first day of work I have ever missed so far w/o an appt or test. I woke in just too much pain. Slept most of the day and tried stretching. Maybe it was your guardian angel Al just giving me comfort and rest...

Goodnight all and God Bless

[AngelManFL]

Hi,

I'm sorry if I always sound negative, but it has been a very tough week. I just don't seem to have the drive or strength to keep up this fight when I constantly hit brick walls.. My Dr did refer me to new a doc(a Hematologist) at the Florida Cancer Institute, I met with him today and he seemed pretty determined to find an answer, it will take some time he said, he ordered all my records from everywhere and said that he will do his best to try and "fill in the blanks" where others may have just overlooked things or maybe missed something. So that is actually a good note for once. My Dr sent me to him to get tested for Amylodosis, a protein that can build up in all the wrong places if over produced in your bone marrow. There may be another item on the table called Ankylosing Spondylitis which is inflamation of your tailbone and all the tendons and ligaments up your spine. Which can cause the bones to sorta grow together and imobilize your spine. At least they are still searching and looking for answers which is a heck of a lot more than the Mayo did. Please pray for my mental state, I plead with you, it is so difficult to get up and go to work everyday, but I must in order to keep my insurance nevermind my job. I just am so weak, but I am at least still trying - it just a lot more difficult as the weeks go by.
God Bless

[crystalkk]

Don,

It's good to hear that you may have finally found the right doctor.

[MtPockets]

Don,
Bless your heart, my friend. I know what you are going through to a certain extent. I pray that God will grant wisdom to your new Doctor to leave no stone unturned and finally be able to help you.

I believe that I am a sum total of 61 years of trials and tribulations such as yours. Forty two years of marriage, 4 children, 15 grandchildren, and all else................

One day maybe you can look back on all this that you are going through and see where you have grown as a person.

I know when we are in the midst of storms, such as when Katrina hit us here in Gulfport, Mississippi, it seeks so bleak and like there is no hope or any way out. Even as we had 165 mph winds trying to destroy our house for over 6 hours, we knew we had to rely on God to deliver us, protect, us, and give us peace in the midst of the storm, and He did.

I pray you also will find peace.

[AngelManFL]

Thank you Crystal, I hope he is the right doc too.. I meet with another Dr over in Tampa next Thurs to check on the spondylosis thing too.. I just refuse to believe that I might have ALS and just keep praying and searching for something from someone or anyone who can find something that is cureable or at the very least treatable.. It is very difficult to keep up this fight as body continues to shrink and my muscles just keep atrophy - I prefer the word shrink - it helps me believe they will grow back.. my breathing more shallow - I thank God for my machine, but it still hard during the days at work..

Capt Al, tthank you for your prayers abd words of love and strngth. I truly do appreciate them - they help to keep me grounded in my faith and help me to keep on trying. Not doing so well lately. I feel like I'm at at true point in my life where this will define me forever.. It is my inside strength I am lacking recently, it is so hard just to type, nevermind speak and hold a conversation. I'm so very tired.. so hard to get out of bed now.. I am drinking weight gain shakes to stabilze loss.. not sure if helping.. must rest my fingers a while, thank you for your prayers, please pray for my docss too. Hopefully I can get through this low valley point and emerge out of current storm like you said.. prayfully better for it. God bless my friends..

[Icanmanz]

Hi Don! Just read your post, sorry I am a little bit behind. I have been having some bad days still. Some days are good, and some are terrible. I get so depressed at times. In a matter of days it will be a year since my son passed, and it's been getting to me. I am so sorry to hear of the problems you are having, I will be praying for you, Don, take care of yourself. God bless.

Irma

[crystalkk]

don,

You said you wanted to get off of some of the pain meds, is anybody helping you do this?
all those meds have many side effects that can make you very tired , it might be contributed to your energy
problem.

[CindyM]

Good eye, Caroline. I missed that clue, myself. Don- what she says! :-D

[MtPockets]

Without my Doctors advice or input I removed myself from 3 of the 5 pain meds they had me on. There was a period of about 3 days that I went through withdrawal and had a very bad time trying to sleep.

A week later I saw my Doctor and he was very upset with me. He said I should have used a tapered dose to come off the medications I was on at the time as it was very dangerous to stop it all at once. He said there could have been some serious side effects and I basically had taken my life into my own hands.

I'm telling you this so you can get good advice from your Doctor before attempting stopping any of your medications. Please learn from my mistakes.

[crystalkk]

Capt Al,

I agree with you on tapered doses, after long term use of alot of pain meds you can have seizures if you just go off them cold turkey.

[Gina]

Don,without a doubt you are my hero!!!You have endured so much and yet you still find the time to show sincere compassion to others.Your spirit and willingness to fight in the face of such incredibles hurdles inspires me.I have to say that you have taught me so much about love and kindness.
I think and pray for all of you on the forum all the time.I have been coping with the loss of my husband ...like you say Don i take it one day at a time and i pray for a cure soon for all of you wonderfull people who are so brave!I miss you all a lot and i dont know where i would have been without the help and guidance and love from all of you who supported me during my husbands tragic illness........thankyou all so much and you will always be in my heart!..........Gina

[MtPockets]

Gina, I appreciate your comments so much. As a man, a lot of times I do not see things that are right in front of me. I have never figured out if it is men are from Mars, Women are from Venus, right brain, left brain, or maybe, no brain?

I just love the way women see the heart of someone and have the tenderness and the compassion to reach right in and lift them up with their words. I wish I had that gift.

Thank you for your comments and to all the women out there who have helped us when we needed a womans insight into encouraging someone.

See I can not even put into words what I feel in my heart, which is thank you all for being here and helping us all make it through this mess. I do not know what I would do without you. :cry::cry:

[Gina]

MTpockets....dont look now but you do have that gift!!!!!!!!!Your words also brought me to tears and lifted me up as a woman.Man,women, left brain,right brain mars or venus we are all connected through our energy,love and compassion and our struggles as human beings on this earth!I am learning that even in the face of tragedy thier are always gifts!Thankyou for my gift this very moment in time!........Gina

[CindyM]

I do not know what I would do without you.

Nor would we know what to do without you, AL! :)

[AngelManFL]

I just want to thank all of you for your support and love and prayers and concern... This is my first and only forum I have ever been a part of and feel so blessed and so grateful to have stumbled across such wonderful loving and caring people.. I thank God for all of you.. My doc and i are slowly reducing my meds together, slower thanI'd liek but he insist to do it slowly.. very tired so short today, just wanted to express my love for all of you - Gina you are right, there are times when I believe I actually feel your love, prayers energy touching my heart and it gives me the streength to keep on going, thank you to all of - your so kind and it brings to tears everytime I come back - but they are tears of joy from your compassion
God bless you all.

[crystalkk]

Don,

I justed wanted to check in with you and see how your appointment went with the Dr in Tampa.
I think you said you were supposed to go yesterday. Hope you are doing ok.....

[AngelManFL]

Thank you Crystal,

It actually went very well - I honestly believe that they have finally found an answer for me - but I am trying not to get hopes up too high, but I just can't help it!! It is called Ankylosing Spondylitis, he put me on a combination of two meds (prednisone 20mg twice a day and Celebrex 200mg twice a day). The combination is actually working and it has only been three days!!! The pain in my tailbone and lower spine is already feeling much better and the swelling is reducing too.. This probably the best I have felt in 18 months! I know that the body can't take predinsone for very long periods of time - but at least for the first since all this started I actually have real relief. So far my stomach is handling it ok.. It seems crazy that after over 30 Dr's or more and way too many pain pills that a simple combo could help so much!!! There is no cure for it either, but it is treatable and if we can aggressively treat it now they might be able slow down the progression. I won't know for three weeks due to the type of gene testing they have to do, but he examined my spine all the records from the Mayo and it seems like areal possibility.. we'll have to wait and see, I go back to the cancer center this coming week also.. I so regret going to the Mayo... My breathing issues might not be reversalble, due to ribs fusing to the spine - causes it to act like a cage - but I should always be able to breathe deeply through my diaphram - it will take a lot of exercise and training to get used to, but it will certainly be worth it.. I can't thank you enough for all your prayers and support - and hopefully I can stay grounded enough just in case it turns out in the end I don't have it.. but either way I know I have your love and support and for that I am eternally grateful. Thank you to all of you and God bless you.

[CindyM]

Hi Don. I am glad you might have an answer! Ankylosing Spondylitis sounds like no walk in the park but at least it is treatable. Cordially, Cindy

[crystalkk]

Don,

You sound so much better, good luck at the cancer center this week......please keep us posted.

[crystalkk]

Don,

How did your appointment at the cancer center go?

[rose]

Don, I'm glad you got somewhere with your appointment, maybe not the best news, but it sounds encouraging. ... About the prednisone... I was on this for over a year's time. Some options for you that can cut back on possible side effects, are to eventually take a dose every other day instead of every day. Also, it is important that you protect your stomach, so if they haven't put you on the over the counter prilosec, it would be best to ask if its ok for you to take this to counteract reflux etc. In my own experience with the prednisone, I was always on other meds with potentially bad side effects simultaneously, but all in all didn't have too many problems associated with it. Toward the end of my treatment I was on two different immunosuppressants and a very high dose of the pred - 60mg daily, and that did cause problems, I developed lesions on the retina of one of my eyes, but my eyes were fine for over 10 months on doses anywhere from 40 mg daily to 20 mg every other day. I believe that the current thinking on giving it every other as soon as possible has been found to be quite good at making it safe to take. good luck to you:smile:

[AngelManFL]

What a diffference ten days can make.. they new med mix is actually working! I can stand up without crying and actually lay down in bed without crying! and we have already reduced my pain meds by 50%!!! The Cancer ctr wants a scan of my abdomen, an EGD and colonoscopy done. But today I went back to Tampa and found out that I do in fact have Ankylosing Spondylitis - definitively! He is switching me off of the Celebrex(killing my guts) and switching me to Sulfasalazine. He wanted me to start Humira immediately, but I really want to try and start with PT and a natural approach first. I read a book this week called the 'Patient Heal Thyself' - it centered on eating the way Bible states and basically has a homeopathic approach. The author is Jordan Rubin who also wrote the 'Maker's Diet'. My hope is that this will kickstart my digestive tract so that I might be able to eat real food again, it's been 10 months. My head is so much clearer w/o all those narcotics - I can't wait to get off of the rest of them. I owe my life to all of you.. 5 weeks ago I seriously considered taking my life, unable to bear another day of searing pain in my spine and no hope in sight. With your encouragement I kept my eyes on God and kept fighting for answers - actually I started demanding answers! That genetic marker I was telling you about they tested for turned out I actually have. I spent most of the day an emotional mess - but in a good way. It has no cure either, but it is treatable and he told me that there may be more wrong, they'll have to see how the scans and other test show up too, but at least I have something finally I can actually sink my teeth into and start fighting! It is very difficult to fight a ghost! one usually loses that fight! Seems odd to be so excited to have something incurable - but I am sure most of you understand - I now having something I can tackle and begin treatment. It will be a long hard road to get back on my feet and prayerfully my spine will oblige me without the use of more chemicals. I pray they will find whats wrong with my digestive tract too... It's from my tongue all the way down... But it is a new day and a new beginning, and have all of you to thank for it. Without your love and support and words of truth and encouragement I might not be here right now - and for that I will forever be in your debt. Al, Capt Al, Gina, Peg, Crystal, Irma, CindyM and to all of you have lifted me in your prayers and kept up my hope with your love and compassion - I sincerely thank you.
Goodnight and God bless you my friends...

[wright]

You just made my night, Don. I am so happy for you. Congratulations to you. I'm sure you won't leave us and make sure you let us know how things are going.
Your fighting spirit will undoubtedly cause others to follow suit . . . and the good news you bring will give many others hope.
The best to you, Don. Please keep taking care.

[crystalkk]

Don,
I am so happy that you are getting answers, yes like Wright said it brings others hope.
Please keep us posted.....

[Al]

I love it when we can take a wreck of a man and help him get his life back. Even if he doesn't have ALS. If we can help here we will continue to help here. That's why David and I decided to keep the site going. Help and support.
AL.

[Gina]

Don, my angelman i am so happy to hear that you are finally getting some answers.I dont come on the forum often but i like to check and see what is happening with certain people and you are one of them!I just came home from a wedding and i have to tell you it was so hard to not have my husband by my side.I left just as the dancing was beginning to start.I loved to dance with my husband and i couldnt bare to stay any longer.I will make you a deal when you are well enough to dance then i will too!You are always in my thoughts and prayers....keep on fighting for all of us her you give us hope!....Hugs Gina

[CindyM]

Nice to hear from you again, Gina. Everything you do this year will be a "first" without your DH, it seems. I wish you well on this chapter of your journey. Cindy

[Gina]

Thankyou Cindy,I also wish you well in your continuing struggle.You do so much to help and comfort all these lovely people on the forum as you did with me!...God Bless Gina

[Jamiet]

Don,

Give us an update, we are all anxious about you feeling better.

Rgds,

Jamie

[AngelManFL]

Hello to all, the Sulfasalasine was a bust... so I am back on the Celebrex and taking the injections of Humira. The difference is remarkable, the swelling and inflamation in my tailbone and spine is so much better and the pain is so much better too. I go back to the cancer center for scans next week but won't get the results until the 27th I think. I started physical therapy this week - I have a real long hard road to get back on my feet again.. my legs have atrophied so much and I have lost so much of my ability to just stand for a minute or so - but I believe I have the determination to work through it and hopefully will be able to walk on my own again soon.. Prayerfully the other test will come back clear. The supplements I have been taking seem to be helping - I am actually eating real food again (soft food) and able to keep it down and actually digest it. It has been since last July!!! So that it is good news also. It's great to actually be able to eat! I want to wish all of the Dad's out there a wonderful a Father's Day tomorrow.
God bless my friends.

[Icanmanz]

Don, so happy to hear from you! That is great news. That's just to show you, prayers do help! God is good! Happy to hear that you are keeping food down, and digesting as well. God bless you, my friend. Oh, and thanks for letting us know.

Irma

[crystalkk]

Don,

It's always love to hear good news, and it also gives the people in limbo land some hope!!!

[AngelManFL]

Hi everyone,

Just came back from physical therapy (legs feel like Jello!!), but I walked almost 60 feet!! with a walker of course - but still on my own! I have been able to keep food down and still digest it pretty well too. I am just over 50% off the narcotics - but taking predinisone and 800mg of Celebrex and the Humira injections.. The swelling and tenderness in my sacroliliac(tailbone or whatever it is called) is so much better it is almost hard to believe!! I just to share some good news for once - you ALL have been so good to me and helped me through the darkest days of my life and helped me come out on the other side of that darkness a much better man and so much stronger in my spiritual journey tham I ever thought was possible. All my love and prayers to ALL of you...
God bless.

[crystalkk]

don,

It's nice to here good news....I'm sure real food tastes alot better than the shakes you were drinking.
please keep us posted!

[CindyM]

Thanks for the update, Don. I think of you often.

[Icanmanz]

These are the kind of news we olve to hear, Don. May God bless you. Take care, and keep us posted.

Irma

[AngelManFL]

Hi Gang!

I walked 260 feet last Thursday!! Still with my walker - but 260 feet!!! I am now able to eat and digest food normally again, those supplements worked a lot better than I ever imagined. It is so incredible to actually taste and enjoy food again! I am 80% off all pain medicine now - wow what a difference! I'll never know how I was able to drive and still be able to run a company being on all those drugs!! But by the grace of God go I!!! Just wanted to share good news with you all and take another chance to thank all of you for so much help and all your prayers. I think of you all often and pray for you too. God Bless.

[Al]

Thanks for the update Don. Be strong.

AL.

[CindyM]

Nice to hear from you, Don. Always great to get some good news, too. Thanks for sharing. Cindy

[crystalkk]

Don, that's great....did you ever get the other tests back from the cancer center?
You must feel like a new man.... walking, less pain, and eating real food after all this time.
Please keep us posted.

[MtPockets]

Don, it is great to hear some good news. Keep fighting, Never Give Up.

[vmd]

...glad to hear the good news!

[ladyk]

Your story was so touching and inspiring. I've had cancelled some testing and given up hope of getting diagnosed. After I read your story, I thought of how strong and brave you were to hang in there. It filled me with hope and I picked up my phone and re-scheduled some tests. One was today. I will think of your story on the days im tired and feeling hopeless. So, thanks much and congratulations on your wonderful diagnoses!!