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#1 | ||
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It is shocking.. My both hands are failing, and he told me bluntly, without any examination whatsoever, I have most probably a polyneuropathy and there is nothing to be done about it.. Just sent me home with naprosyn.
I am going to see another neurologist next monday, but need to cope with my shock till then. Is that really all a doctor can do for you? In 2014, and in a supposedly advanced country? What should I do? Just wait until I cannot even brush my teeth?? I did all the exams - MRI, EMG, spinal fluid 7 years ago and they didnt show anything, but first: I dont have the results anymore, so he didnt see them, second, how can he be so sure nothing was overlooked? |
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"Thanks for this!" says: | hopeful (10-17-2014), St George 2013 (10-17-2014) |
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#2 | |||
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Wisest Elder Ever
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It may be his OPINION that you have a hereditary neuropathy.
Some doctors will give this diagnosis, but you won't know for sure unless you choose to have the DNA testing for Charcot Marie Tooth. CMT has significant effects however, in the feet and legs. There are many causes of PN (over 100). And there are doctors unwillingly to find them for you. It is arrogance or ignorance on their part. (or if your insurance type is limited in scope, cost may be a factor) Here is a link to Quest diagnostics here in the US, that reflects Dr. Latov's (in NYC) testing protocols: http://www.questdiagnostics.com/test...ripheralNeurop If this is only in your hands and not affecting your feet yet, that suggests perhaps some carpal tunnel, or orthopedic neck issues. Hypothyroidism may affect the hands this way ...it did for me. So getting the thyroid evaluated well, may reveal something. If your B12 is very low, this too will affect the nerves and spinal cord. So you should check that you are not below 400pg/ml in that test result. Have you tried wearing the carpal tunnel wrist braces at night to protect your hands from compression during sleep? I'd do that ...you can do that yourself without a doctor.
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"Thanks for this!" says: | hopeful (10-17-2014), St George 2013 (10-17-2014) |
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#3 | ||
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Thank you. Just one thing now: my MRI of brain and neck which I made earlier this year did not show any abnormalities. So, I would think it does not make much sense to engage an ortho. I've seen 2 orthopedics in the last 7 years, and they did refer me to a neurologist.
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"Thanks for this!" says: | hopeful (10-17-2014), St George 2013 (10-17-2014) |
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#4 | ||
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And if you have a family history they will assume it is CMT. Unfortunately in that case what the doctor said is true. I have had two neurologists dismiss me with the same news, one at Johns Hopkins where the first sent me for a second opinion.
I had numbness in my feet and pains in my legs for years but the symptoms in my hands were more bothersome, with weakness and tingling that woke me every night. My first neurologist was very thorough in looking for a treatable cause before she released me. It is unconscionable to overlook anything. Second and even third opinions are important but it is also important to accept what is, if you do have CMT. |
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"Thanks for this!" says: | St George 2013 (10-17-2014) |
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#5 | ||
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I have no family history of neurological diseases. My symptoms are very troubling, I can't lift my right hand and my both thumbs at all and it has progressed, there is big muscle atrophy, so yes, I do get upset when a doctor tells me he can't do anything without a proper check, or re-check. I will try to get my old clinical results from 7 years ago, because, maybe, something was missing, badly interpreted, or overlooked.
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#6 | ||
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Quote:
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"Thanks for this!" says: | hopeful (10-17-2014) |
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#7 | ||
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I have tried physiotherapy myself, this year from January till June, and I've noticed a rathe small improvement. Could you describe what your physiotherapist did with you? Mine was just stretching (painfully) my both arms and hands. I sometimes had pain afterwards, it might have triggered an inflammation.
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#8 | |||
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[QUOTE=aneczka;1103605]I have no family history of neurological diseases. My symptoms are very troubling, I can't lift my right hand and my both thumbs at all and it has progressed, there is big muscle atrophy, so yes, I do get upset when a doctor tells me he can't do anything without a proper check, or re-check. I will try to get my old clinical results from 7 years ago, because, maybe, something was missing, badly interpreted, or overlooked.
aneczka You say your clinical tests results are from 7 years ago. Does that include the emg/ncs that were "normal" back then? Maybe its time to have those tests done again. My Neuromuscular Doctor/Neurologist repeated my tests two years later to see if there was any progression or a difference in results. Sounds like you need more testing done. Did they tell you your polyneuropathy was Idiopathic? Sorry your going through this, neuropathy sucks!! |
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"Thanks for this!" says: | aneczka (10-21-2014) |
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#9 | ||
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Member
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I'm going to have EMG done again, in a university clinic here. I will also have my old readings from 7 years ago some time soon. Now, unfortunately, I've noticed I do have fasciculations in my legs also, I guess I just suppressed this information and didnt want to think about it. Anyway, I will have EMG on hands and legs.
They didnt actually tell me anything back then. "we dont know what it is, probably a local lesion which will go away on it own, but if it gets worse, come back to us". That was not helpful at all. How can I stop any possible inflammation? I've got naproxen pills, are they any good? |
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#10 | ||
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Member
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Hi, I've just got my old test results from 2006. MRI both with and without contrast agent, done on the entire upper body part including shoulders and both hands, found nothing. Spinal fluid showed nothing. EMG found denervation in my right hand. Vitamin B12 was at 352 ng/l. Was that too low? The doctors didn't bother with that and suspected plexus neurosis or neuropathy.
As for other results, Natrium was on the lower reference end. I've found a new, good GP, she has a lot of experience, and she teaches at the university here. She spent 45 minutes with me, asking a lot of good questions. She did think about potential B12 deficiency herself. She has seen someone with similar symptoms caused by B12 deficiency, a woman misdiagnosed by neurologists, whose both hands were damaged, so she ordered me to have a B12 test, which I'm gonna do next week. I feel I'm in better hands now. Last edited by aneczka; 10-25-2014 at 06:53 AM. |
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"Thanks for this!" says: | mrsD (10-25-2014) |
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