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Old 04-12-2012, 08:44 PM   #1
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Finally a Diagnosis

I was diagnosed today with Non-Systemic Vascultic Polyneuropathy. I had a EMG test done today (my 3rd one) , it showed up things that I do not understand. I had a chance at a cancellation today for the specialist I have been waiting for. He explained that my toes do not move because the muscles are not working. I need blood work done, a change in medicine taking prednisone for 1-2 months decreasing until I hit 20mg, also fosamax 1 x a week, witha increase in calcium & Vitamin D. I am scheduled to have IVIG infusions. This is all very confusing. My ankles are starting to weaken which progresses to drop foot. He wants to prevent this so he seemed like we need this testing done asap. he said things like my immune system is attacking my bloodcells? If anyone can interpret in English I would be greatful. Thanks June
My mind is mixing everything up

Last edited by June89; 04-12-2012 at 08:48 PM. Reason: not finished

 
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Old 04-13-2012, 11:50 PM   #2
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Re: Finally a Diagnosis

Hi June
Congratulations on finally getting a diagnosis!! I am sure it isn't one that you were hoping for, but at least you have a starting point.

The doctor feels that my neuropathy is related to my rheumatoid arthritis. That is also an autoimmune disease. My body is recognizing itself as something foreign and is attacking itself. My immune system is totally wacky. Plus my inflammation levels are off the charts!

I am happy that they have a plan for you. You are lucky to have found a specialist who is interested in helping you. The first neurologist I saw said he couldn't help me and left it at that. I finally saw a second neuro who diagnosed me with small fiber neuropathy.

But I have no treatment plan or even a follow up visit with this doctor. All I have is a narcotic medication that really doesn't help much.

I hope you will post your progress!! I really hope everything works out for you!
Best wishes,
Daisy

 
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Old 04-23-2012, 10:20 AM   #3
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Re: Finally a Diagnosis

June, I am glad to hear you have a diagnosis. I am glad that there is some treatment for your neuropathy. I hope they can reverse some of the damage that is being done. I believe the doctor is telling you that you have a type of vasculitis. This is a disease where the immune cells attack your blood or nerve cells causing the neuropathy. I wish you well in your treatment.

 
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Old 04-23-2012, 10:26 AM   #4
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Re: Finally a Diagnosis

Daisy, I hope that you do get a followup. Has Lyrica been tried? It helps with neuropathic pain. It is a seizure medication so there are side effects but they are outweighed by the relief in my opinion. I am on Lyrica and narcotics and while I still see a neurologist they are just tracking the progress of my condition since they cannot cure it, only providing sympathetic care. I have idopathic neuropathy.

 
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Old 04-23-2012, 06:10 PM   #5
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Re: Finally a Diagnosis

Hi Tingles
Thanks for you caring post!
In the past I have tried Lyrica, Cymbalta, neurontin, Topomax, Elavil, and many other anti epileptics and anti depressants. So many I have lost track!
I had so many side effects that I couldn't take the Lyrica or the Cymbalta, plus my insurance wouldn't cover them anymore and they became too expensive for me to take. I did find that Lyrica really did help my fibromyalgia, but I gained over 30 lbs on it and I made so may mistakes I was almost fired from my job. It really messed with my thinking. I wasn't able to drive a car either- too loopy.
The neurologist that finally diagnosed me with SFN related to my RA has told me not to return as she has nothing more to help me. She did say to check with her in a few years to see if there were any new drugs in the works for neuropathy.
Not too encouraging!
But I try to take it one day at a time. I find that if I can get to the pool, I have a better day. But the terrible cramping of my toes and feet and the constant aching of my legs really wears me out. My RA problems seem minor to me over the worsening symptoms of the neuropathy.
Oh well, I do what I can. Hope you are making it thru the days as well!
Best wishes,
Daisy

 
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