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strikeout

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My 54 year old husband started at an ALS clinic in 2005 because of fasciculations and slight weakness. After a few visits and tests he felt he did not belong there. Had a late diagnosis of polio when he was about 12, probably 7 years after he had supposedly had the disease. Therefore he began going to both a local neuro and a post polio clinic. Meanwhile, his fasciculations are popping everywhere, notice some muscle wasting, and his muscle weakness is so bad he hardly walks anymore! Uses a cane for a few steps, and has 2 AFO's. Post polio doctor said his symptoms do not look like his typical PPS patients, so he sent him back to the ALS clinic. He recently had much blood work, which we do not know the results of, and this Monday he goes for a spinal tap. His EMG, done by local neuro showed it was up fro 1+ to 2+ (whatever that means), also chronic denervation shown from polio. ALS doctor said things may not show up on the EMG because of the polio, but she is doing a repeat one. He says he is weaker every day and does not think he will be walking much longer. He is very depressed. He is convinced he has ALS, while I tell him it could be so many other things. Extremely hard on him waiting for tests, answers, etc. Also, to add this to the mix he was on Lipitor from about Nov. '06 to May '07. If anyone has some thoughts to share, that would be great.
Thanks and god bless.
 

Gina

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Oh my goodness i just wish that i had something helpfull to say.My husband is in the late stages of als and when i read your post i brought me back to the time it took to get a diagnosis for him...The wait and anxiety about the results were unbearable at times.Sometimes it just makes me so angry because it is almost like they have all the time in the world while your world is waiting for thier time....dammit i get so angry when i hear that people are still going through this agony of just waiting....im sorry i probalbly didnt answer any of your questions but wanted you to know that i feel your pain....God bless you and keep you strong.
 

qualitybabe823

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I understand what he is going through, I have been trying for 2 years to get a diagnosed. It is so very frustrating, you don't know what to tell people when they ask what is wrong and unless you are going through it, they don't want to believe that it takes this long for a diagnosed. My thoughts and prayers are with you and your husband. God bless and lets concentrate on what we have today, that's all we can do for now.
 

CindyM

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Hi Strikeout. I am sorry that this is happening to your family. Perhaps there are some ways we can help. For one thing, tell your hubby that he is not alone. Guite a few folks around here are trying to get a DX. I've been trying to get a firm DX for almost 18 months now. My symptoms started back in 05 but we didn't connect the dots. I finally figured out that if I have to wait, I may as well make the best of things. It is not easy but it is the only think I can think of to do. Cindy
 

strikeout

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Thank you all for your thoughts (and prayers). I will keep you posted after my husband's lumbar puncture.
 

geehdee

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Oh the waiting!

It also took quite a while for my diagnosed. I began with symptoms almost four years ago, but I know that only in hindsight. My condition got lost in the process of being surgically treated for a spine problem, and only recognized after not recovering properly. At my first neuro visit, the doctor stated bluntly that the preliminary diagnosis was ALS and that all the tests being prescribed were to RULE OUT everything else. So although I didn't get an official diagnosis for over 6 months, I knew. But I didn't KNOW. Finally, after driving myself and family and friends nuts with anxiety, I realized that if it was ALS, it would eventually kill me. If it wasn't. it wouldn't. Funny how that comforted me and I was able to continue on much more at ease. Turns out, of course, that it IS ALS and it will kill me, but now I appreciate every day that I'm not dead yet. I am pretty immobile but only supremely uncomfortable, but not in agony and feel lucky about that. I know the waiting is hell. But waiting only takes time. Hell takes forever.
 

strikeout

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It is hard to beieve how long some people wait for a DX. All of my husband's blood work came back okay. Have not heard any word on his spinal tap, which leads us to believe that if the doctor found something, we would have gotten a call. He is scheduled for another EMG on Jan. 3. And then his next appt. is not until Feb. 26 with the ALS doctor. It seems like they could admit you and do all of these tests in a week, instead of such long lapses in between appointments and tests. I really appreciate all of your sharing and caring! You have great attitudes about the waiting. God bless. I will keep you posted with any updates.
 

vmd

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strikeout:

Yes, we can all empathize with the waiting game. Since a definitive diagnosis may take months or even years,all we can do for now is support each other with stories of comfort and hope. We can also read about the many people here who are living with ALS. I will keep you and your husband in my prayers.
 

strikeout

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Thanks so much for your prayers. My husband had his EMG today, and was told there was a difference between the one he had in 2005 and todays. Was told he definitely has a MND, but nothing specific. Was told a little more examing of the test is needed to see about it being Post Polio Syndrome. Husband still says "I know what I have". He cannot be optimistic.
 
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