Test Results-What is your opinion?
AnonymousSeptember 26, 2008 at 10:19 pm
I was able to get my test results back on Tuesday. Very little was new and no confirmation about CMT, however, he did say no CIDP. My LP was normal. Tests to date: NCV,EMG, LP, SEEP, genetic test and my diagnosis is still demylinating polyneuropathy.
He said there was nothing he could do. He did, however, give me pain pills to releave the pain in my feet. This was only after my husband and I pressed the issue. I hope they work, so that I can work.
Your opinion what do I do? Do I just accept this and say there is nothing I can do?
September 26, 2008 at 10:38 pm
As a last resort, I might try a nerve biopsy. If the doc says it is a demylienating neuropathy, he has to treat it just by the nature of the word. The nerve biopsy although frowned upon by some, would definitely r/o any demylienations. If there is no onion bulbing, you have to search for an answer and another doc to help you get that answer if this one won’t. Have you explored ms? Lupus? What Norb has? (check out his name on the members list and it tells you his dx) Good luck to you and I pray that the pain pills help you get some relief from the pain while you search for an answer. I am glad you had your husband with to insist on the meds for you! Please keep your spirits up, please try to keep the all smiles attitude. THere is an answer out there, you just have to keep searching. Although daunting, you have too!! (We went through three docs) Best wishes and prayers and good thoughts sent your way.
Dawn Kevies mom
AnonymousSeptember 27, 2008 at 1:30 am
Hi all smiles, don’t accept the there is nothing I can do answer, its not an answer. There are things to do especially if its dem po;y, ivig or pp can help. Normal lp doesn’t rule out anything, 5% of people with cidp have a normal lp, I’m one of them. Keep going after an answer, there is a very good neuro at U of Michigan if you can get into him. Don’t give up, keep smilin and trying for a good dx and treatment. Take Care.
AnonymousSeptember 27, 2008 at 10:53 am
It’s time for a new dr. Find one ASAP. You absolutely DO NOT accept this diagnosis.
The definition if demyelinating is: to obliterate or remove the myelin sheath from (a nerve or nerves).
That doesn’t happen for no reason. Your myelin just doesn’t go away on it’s own. SOMETHING is causing it. This dr should know that. To send a patient away who is in an active stage of demyelination is absolutely the wrong thing to do. Wrong, wrong, wrong!
Please forgive me, but I am SO sick of hearing about dr’s treating their patients this way. It’s ridiculous & I feel so bad for you.
Are you near somewhere like Mayo? You need to go to a big hospital & see the best neurologist on staff.
Did your NCV show demyelination? If the dr is dx’ing you with it then it should have.
With CIDP you don’t always have high protein levels in your LP.
Did the dr do a blood test to check your SED rate? That shows inflammation. It’s an important blood test for you to have at this point.
Did the dr order an MRI of your brain & spine? These are also important tests to have. It will show any tumors, inflammation, etc.
Good luck & do NOT give up,
AnonymousSeptember 27, 2008 at 9:30 pm
i would like to say first and foremost–hang in there. It is really, really tough to not feel right and also not have anyone be able to say way that is the case. However, I would also like to say that things as subtle and complex as the nervous system sometimes take time to manifest exactly what the problem is. Also, it is worth remembering that not all demyelinating conditions are inflammatory and IV IgG or plasmaphoresis will not help if it is not due to an immune attack. In your first post, you mentioned CMT–this is a case of a demyelinating polyneuropathy (in the type I cases) that is genetic AND will not respond to IV IgG or PP because the problem is not due to inflammatory attack. For CMT and other hereditary polyneuropathies, there may be no treatment other than minimizing the effects of the illness.
I would like to throw this out there only anedotally. There have been some studies of carnitine helping the fatigue of MS. I tried it and it seems to help the fatigue of my polyneuropathy. It is pretty benign–just a “herbal” supplement that you can find at pharmacies and health food stores.
WithHope for a cure of these diseases and the patience to live well despite them if that is not possible.
AnonymousSeptember 28, 2008 at 4:45 am
I had a neuro tell me that my problem was stress and alcohol. He told me to stop spending my time on Dr.s and spend it relaxing at home. That was in 1989. I filed for, and was approved for SS disability in 2005. The 10 years between that Dr. telling me that story, and my eventual diagnosis was VERY slow progression. BUT, If he had probed deeper and found the cause, early intervention mat well have stopped it beforte it got so deeply rooted in me.
If it was me, I would try to get a diagnosis. There may be a treatment regimen available. It is sometimkes hard for a highly respected Dr. to say “I don’t know.” But I have found, over the years, that the BEST Dr.s aren’t afriad to know when they are stumped and refer you to an expert who might know.
Keep on plugging and don’t quit.
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