[aneczka]

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?

[mrsD]

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.

[aneczka]

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.

[Susanne C.]

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.

[aneczka]

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.

[Susanne C.]

Originally Posted by aneczka

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.

Have they tried physical therapy? I had a flare up about six or seven years ago and couldn't even take wash out of the washer, my hands were useless. Even with the disease process we were able to get most of the strength back in my hands and arms and return to a slower rate of progression. Physical therapists often know much more about what can and can't be regained than doctors.

[aneczka]

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.

[Kitt]

How long has this been going on with your hands?

[Susanne C.]

Originally Posted by aneczka

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.

We started with stretches, then moved to baby weights, very light, wrist curls, windshield wiper movement, nerve glides. They always went very slowly and finished with the tens unit and ice. The more that you describe your symptoms the less it sounds like neuropathy, at least any that I am aware of. Did the therapist give you any feedback as to their thoughts?

Therapy often triggers inflammation- that is why the ice and ibuprofen are so important as follow ups.

[beatle]

Have you tried Tai Chi? You could do it at home to a DVD, it moves slowly so there is minimal risk for injury or flareup and I have found it to be one effective tool for balance and coordination.

http://www.ncbi.nlm.nih.gov/m/pubmed/20503464/