Help! the neurologist told me today there is nothing that can be done.
 

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?

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.

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.

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.

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.

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.

How long has this been going on with your hands?

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.

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/

Kitt, my right hand since late 2006, my left since this January and the left is worsening :(

Susanne, my physiotherapist is skeptical of doctors, apart from orthopedists. He thinks it a form of repetitive strain injury caused by hours of PC work, plus that my nerves might be trapped/pinched somewhere on the way. He does think in a mechanical way, like a real physio should do :) There is probably only one way to find out: MRI of shoulders and both hands.

My hands didn't worsen during the summer, probably because I was swimming A LOT, a few times daily. (they didnt improve either, but I could live with that, and I had no pain whatsoever, which was wonderful). They only got worse last week when I went to a mineral springs spa resort, it did feel like an inflammation. Hot water made them worse. Does that point to something? The neurologist I've seen today wouldn't even listen to such information :(

Let me give you the link to our thoracic outlet syndrome forum (TOS) for short...
even if you don't fit the exact diagnosis we have many posts & sticky threads with therapies & self helps.
main page- TOS
http://neurotalk.psychcentral.com/forum24.html

useful sticky -
http://neurotalk.psychcentral.com/thread84.html
http://neurotalk.psychcentral.com/thread125577.html

Most drs are not fully knowledgeable on this condition, or they say they do but only a slight bit or wrong..
A very good PT or expert chiropractor might be of help quicker than chasing an actual diagnosis..

Thanks, I will have a look at that. I also read about B12. One thing I remember from the tests they did back in 2007: they did wonder about my EMG and repeated it twice. Something was bothering them, the results were inconclusive, but the nerves were somewhat slow. Hope that makes sense :( I've made an appointment with another neuro who wants to do EMG again, well why not, I'm ready to do everything what's possible or more :(

I would persue a legitimate diagnosis with a new neurologist who actually wants to look for one, in addition to trying therapy to get more use out of your hands now.

I will do exactly that, echoes. I am only 39, I do feel young and do not intend to get severely disabled if it can be averted. Certainly not because a doctor didnt feel like checking on me. Cheers

Conditions affecting the MOTOR (movement) neurons are more
immediately serious IMO than sensory.

Usually sensory neurons are affected first by most triggers. But autoimmune disease and things like GBS, affect motor neurons and one can lose mobility and maybe permanently.

Most toxins and poisons affect both feet and hands. If you only have hands affected, and this going on for years, then there is "something" causing this. Something mechanical most likely.

Many of the serious neuropathies are progressive, and the feet would be showing problems by now as you have had this for years.

Have you been evaluated for arthritis? Both OA and RA?
Do you have hard nodules showing up on your first finger joints?
http://www.webmd.com/arthritis/heber...ouchards-nodes
I have both of these types, on both hands, but they are not really large yet, except my right thumb. Sometimes they hurt and sometimes not. My magnesium lotion (Morton Epsom lotion) seems to keep them to a dull roar most of the time.
You can soak your hands in warm epsom salts in a tub and see if that helps. The magnesium works on pain receptors and gives some relief.

Do you have itching, or rashes?

Hi, no itching, no rashes. Just weakness and loss of movement. I did think it could be arthritis, so I did X-ray of both hands only last week. The ortho told me both were completely normal, not a sign of an arthritis. (but what is OA and RA you mention?)

I don't have these nodes.

I feel like posting pictures of my hands, maybe things would be clearer. (the neurologist today just made a very strange face when he saw them.. rather unprofessional and didnt exactly make me trust his experience .. ) I don't know if people do that here. It may help if someone has a very similar appearance.

Any other symptoms? Anyone else in the family have anything similar? Another EMG with a good neurologist might be in order since something was bothering them about the results of the one you had.

No other symptoms, Kitt, and no neurological disorders or anything similar in the family. I will do an EMG next week.

OA and RA -- osteo arthritis and rheumatoid arthritis



Do you notice if you have forward head posture, or forward/hunched/rolled shoulders? Viewed from the side in a mirror? or ask a friend..

Those postures can close/pinch/impinge the area where many nerves and blood flow to the arms and hands..
Also does your armpit feel tight or puffy?
Neck muscles tight or burning, same for upper back?

http://neurotalk.psychcentral.com/album.php?albumid=422

Osteo-arthritis -most probably not, as the X-rays were good. Rheumatoid - what is the way to find out? I have that on my list of things to ask the neuro next week.

Iactually have a visible ball (not sure how to describe it) on my upper back muscle; my physio told me I shouldn't worry and should swim more to get it go away. I think it got better in the summer. Sure I will want to have an MRI on that area though, even if it is "just" a muscle.

I surely do have hunched shoulders.

Neck muscles tight, yes, and only get better with lots of swimming.

I think I will have to do that MRI.

Regarding symptoms, I forgot about fasciculations. I had a lot of them 7 years ago on my left hand and forearm, now less but they do happen. I have them on my left hand also, on the hand and forearm with a pinching sensation. I've noticed them today also on my right upper arm, and I dont like it, because it makes me think the disease- whatever it is - is progressing not just to my left side, but alo upwards.. :((

Can you recommend a specific DVD?

Scott Cole and Dr Paul Lam are both great instructors but before you buy something you might not use, check out Tai Chi on YouTube. It's slow and meditative but if you can get into it and do the movements, it can help with balance and coordination.

Is it neuropathy at all?
 

Can any neuropathy dramatically waste your hands?

CIDP can. (chronic inflammatory demyelinating polyneuropathy)

enter "wasting hand muscles" into Google.

Here is one example:
http://www.rightdiagnosis.com/sym/wa...nd_muscles.htm

Yes, CMT can and it is inherited.

Thanks.. and how is it diagnosed/treated?

This is treatable, I see.. the useless neuro I saw yesterday told me immunoglobulines may be effective, although he didnt believe it was useful. But he was at loss, so I dont know what to make of it. Gonna see another one next monday.

Muscle wasting can happen from pinched/entrapped nerves too, many with severe TOS can have it happen and sometimes a claw effect if severe enough and long term..

I would start working on postures and getting the head/shoulders back and down to see if this helps a bit or not.. you can do this on your own while seeking other dx & tx..

I posted my album link with some simple self help ideas previously.
I would suggest doing those many times a day.
If pain increases then stop, or ease back to a less demanding positions, like the yoga corpse pose..

If a nerve is pinched/entrapped, which was also the idea of my physio, it would be visible on MRI? So that the right points would get targeted with any necessary therapy.

Drugs-induced?
 

Not sure if this is related. Around 4 years before the whole problem started, I was diagnosed with severe depression and was put on antidepressants. 2 months or 1 month before my right hand just dropped down, I changed antidepressants from SSRIs to an older tri-cyclic one (don't remember the name), which I didn't tolerate well. Could that be somehow related?

The only potential, clear pattern I see in my health history, would be gluten intolerance or it. B 12 deficiency. I saw a doctor once for chronic fatigue when I was 16, and got a huge depression years later.

Many of the TOS issues don't show up on MRI unfortunately. If a bony or some anomaly then it should show .
Makes harder to get a knowledgeable dx..
plus if laying down for MRI the compression is usually less as it could be something due to being upright and postural.

Sometimes it is not a large/main nerve that is involved but smaller nerves.

Actually an expert /advanced PT should be able to evaluate and test hands on to track it down , often more cost effective than imaging .

Hi aneczka. Regarding your hand.

I saw your post here just now about muscle wasting.

I had a pinched ulnar nerve (cubital tunnel syndrome) many years ago and that certainly changed the way my hand looked.

Lara, it's just .. that my both hands are now severely affected, not just one. How can you get your both ulnars pinched? In a distance of 7 years? I think something more creepy is going on. I would like it to be just something like that, mechanical-sounding, which can be corrected. How did they diagnose it?

I understand. It's maybe not related at all. Of course it would be possible to have trapped nerves somewhere for a long time, but why I don't know.

This is old but it explains some more about cubital tunnel syndrome. I'm not saying that's what's going on, but it can cause wasting in hands.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2599973/
Postgrad Med J. Jan 2007; 83(975): 28–31.
doi: 10.1136/pgmj.2006.047456

If I was in your position I'd be wondering about autoimmune diseases.

Oh, and in my both hands, it was thumbs that got affected first, and are worst now. It could be some other nerve so.