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Nancy

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Joined
Jul 27, 2007
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4
Reason
PALS
Country
US
State
Michigan
City
Cedar Springs
Hi!
I am still trying to get diagnosed with something. My right arm became weak after the holidays. I worked a lot of hours, all very strenuous hand fine detail work, so they put me through the normal carpal tunnel, pinched nerve stuff. I kept trying to tell them, no not painful, weak. No, not tingly, heavy-clumsy. Then my left hand, arm became weak. My doc says, hey all tests are neg. I think you are fine- here take celebrex, call me later. So, I go back to DOC, who thinks I am a nut case by now, but did some blood work. I have high titers, and a positive auto-immune result. I finally have an appointment with a neurologist that is supposed to be THE MS GUY in Grand Rapids. My legs have gotten weak in the last two weeks. It takes me a while to go up steps now, and up hills. I need to stop and rest- not because anything hurts really(I get a little achy when I am still), but it is hard to catch my breath, my heart is beating fast, I feel like Olive Oil right before she faints and Popeye catches her! I am coming to terms with not being able to work. I simply can not hold on to the handpieces and instruments. My hands seem to freeze with over use. I am a dental tech, and I own a lab with my husband. We finally got our business smooth sailing, but now we have had to hire someone to take my place. I am only going in long enough to try to train this new guy to take my place. I bid on an electric wheelchair on e-bay, and am going to buy it. My husband thinks it is morbid for me to be getting a wheelchair while I can still walk. But he is not inside this body. My heart races, and I sigh a lot now, and rest to catch my breath quite often. I am thinking that this is progressing rather rapidly to be MS, and the respiratory struggles sound similar to ALS. I have had problems swallowing for the past 3 years. Quite a few calls to 911, before I could train myself not to panic, and aspirate my food. I feel very alone. I do not have a support group yet, because I have not been diagnosed.
Any input out there? Thank you for listening. I actually feel better already.
Nancy
 
nancy...I understand your anxiety and pressures...If you think you have MS, they should do an MRI which is 90-95% sensitive for this. What is the positive auto-immune result, s it ANA? if so, then unlikely to be MS...a lot of inflammatory myopathies....

best of luck to you...I think this forum is full of pouring and breaking hearts
 
Yes

Yes, I have had a MRI. It was neg, but it was done with no dyes. MY ANA was POS. I have been looking at auto immune diseases, but just really do not know what to think. I had the electric testing done on my right arm a while ago. All that was normal. I pushed myself to continue walking and excersising, but now it is tiring, not just uncomfortable. From what I have seen, MS is an auto immune disease. Is ALS? Thank you for responding.
Nancy
 
Nancy...

I don't think you have ALS or MS, although I am not a neurologist...I don't know how old you are, but I think you will require more blood work...you should see a rheumatologist. Positive ANA means they have to do more blood work...I suppose a neurologist won't hurt though...common things are more common...so if your ANA is positive, likely you have an auto-immune disease....ALS in some may be such, but there is no association with ANA and it is unlikely.
 
Nancy:

You have come to the right place. You will find many supportive and knowledgeable people on this forum. Did the neuro say you have measured objective weakness or do you feel as though you are weak? Usually, ALS presents itself with fasciculations and atrophy in addition to weakness at some point in the process. If you had an EMG on your right arm and it was normal, that is also a good sign. It sounds as though exploring the immune issue will be more promising than MND.
 
Nancy - I know how terrible it is to get the fast heart rate and shortness of breath. That is how my whole disease process presented itself. A few months later that settled down and I was left with twitching, weakness, cramping, achiness. Did you have a CPK level done? I really think a rheumatologist is what you need. There are so many autoimmune diseases and you could possibly have lupus. As you know, there are many things this could be and you may have to visit a doc from every field before you get to the bottom of it. But, whatever you do, keep pushing until you get answers. Many illnesses are best treated early. Good luck~Leslie
 
Nancy said:
Yes, I have had a MRI. It was neg, but it was done with no dyes. MY ANA was POS. I have been looking at auto immune diseases, but just really do not know what to think. I had the electric testing done on my right arm a while ago. All that was normal. I pushed myself to continue walking and excersising, but now it is tiring, not just uncomfortable. From what I have seen, MS is an auto immune disease. Is ALS? Thank you for responding.
Nancy
ANA is high in Lupus Anyone mention that Pat
 
Hi Nancy. I hope they can find answers for you soon. Keep searchign and don't forget we are here for you when it gets discouraging. Cindy
 
Thank you

Thank you for the input!
I will get some more answers from my test results, and I will be back to you in a few weeks. More waiting for now. I'll keep all you in my thoughts as I wait.
Nancy
 
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