Peripheral Neuropathy progression

[honky]

Hope you can help. Diagnosed with peripheral neuropathy in feet 4 years ago. Had MRI, spinal tap and all blood tests - no cause could be found.  Now progressing up legs to hips and in hands.  My question is whether heavy alcohol consumptions years before could be causing the problem now.  I drank quite heavily during a period of severe marital problems but dont drink at all now. Am only 46 years young.  Also I live in London and wonder if coming to the States for treatment would be of benefit.  Thanks so much.

[redtruck53]

A related discussion, Progression was started.

[plv]

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[mollymaguire]

Sorry to hear about your husband. I have been using a walker off and on for a couple of years but thought numbness of feet and hands were due to systemic lupus.  Just diagnosed w/ polynueropathy this week.  I will research CIPD, mainly because my nuerologist did no testing before diagnoses. My g.p di test for b12 (normal) and my diabetes is fairly well unfer control.  Thanks for your time and suggestion.

[jesarose]

Ask the neurologist if it's CIDP.  It stands for chronic inflammatory demylienating polyneuropathy.  My husband has it.  He's on prednisone and doing IVIG treatments.  He's still not able to move his feet/toes.  Anyway, don't mean to scare you but my husband and I think that if he was diagnosed sooner then he wouldn't be using a walker.  

Good luck!

[mollymaguire]

Re; alcohol and nueropathy.  Went to neurologist yesterday and was told (for what it is worth) that alcohol has a very negative affect on the nerves, but an occasional glass of wine (ONE) like a couple of times a month was not banned.  Good luck

[CCF-Neuro-M.D.-PW]

Unfortunately up to 30% of peripheral neuropathies remain undiagnosed despite extensive testing
As years go by this number is decreasing as diagnostic methods improve

There are an extensive list of causes of peripheral neuropathy of which not all need to be tested for - your clinical picture can narrow down the possible causes - I cannot be more specific in your case. Alcohol is toxic to nerves, and while it may not be the sole cause, the fact that you have less 'reserve' of nerves, may make a second insult to the nerves more likely to cause symptoms. The peripheral nerve endings at the end of the longest nerves ie in the feet are the most sensitive to injury.

It may still be useful to have an expert here review what tests you have had done, see if there are any not done, and assess whether any genetic or biopsy of nerve/skin would be useful. Recently, skin biopsy looking at epidermal nerve fiber density and morphology is providing new insights into the early detection of for example diabetic neuropathy (even before diabetes is clinically evident)

The Cleveland Clinic has an international center which coordinates the visit of international patients, so our neuromuscular department could help. There is also an e-consult facility on our website which may enable a more formal opinion from a distance

[honky]

Hi Kelly,  Thanks for your reply.  I dont really have anyone to ask as my mother died when she was 45 and as far as I know she didnt have an PN symptoms.  I do have very high arches in feet but assumed that was from years of wearing high heels!  The reason I said about the alcohol was what I had read on some sites that alcohol can cause neuropathy but I know in my heart that it was situational rather than an alcohol probelm and I haven't drunk for a long time so really clutching at straws rather than anything else.  How do you get a diagnosis of CMT as I have had loads of blood tests etc.?
Thanks love Pauline

[jack60]

I do not know if you have that problem but I f I were you, I would seek an Osteopath who is much more qualified that a doctor as he / she has extra knowledge in nerve.

Good Luck

[Navy_mom_of_2]

Hi Pauline,
Since you have no family history to check out I think I would go to a neurologist and tell him or her of your symptoms. He will do a physical exam. Easy stuff like checking your strength, asking you to walk on your heels and on your toes, neither of which I can do because of the CMT (I have never been able to walk on my heels, even as a kid), and of course he'll ask you a bunch of questions. If he thinks it's necessary, he'll want you to have an EMG. Do you know what that is? It's not really painful, just uncomfortable. They put small probes in the muscles in different areas of you hands and arms and in your feet and legs (for CMT anyway). Then the specialist releases a small amount of electricity into the muscle where the probe is and measures the response of the muscle. I guess that sounds kinda scary but it's not that bad. I'm having one done in a couple of weeks.  Anyway, they can do a blood test. I have never had one for my CMT. But there is a blood test out there. I'm not sure what all it tells us, but I do know it will tell a person which type of CMT they have. There are several different types. I was just told by one of the doctors at the MDA clinic that I went to in San Antonio a few weeks ago that I can have the blood test but that it's expensive. About $2000. And in my case, since I know I have it and that I got it from my dad, my type is more that likely type 2. I don't care which type I have. To my knowledge, their all treated about the same. I know I'm rattling on but I'm trying to be thorough. Sorry! So if you don't already have one, find a neurologist and he'll take it from there.
On the alcohol thing, you're right about not drinking when you have PN. Believe it or not, I just found that out recently. I don't drink a lot but I did drink socially. Not anymore. My poor muscles need all the breaks they can get! I have not heard about alcohol "causing" neuropathy. Just that the alcohol can make the NP worse. I hope I've answered you questions. I also hope that the doctor who monitors this forum will be able to give you much more that I have given you. Hey! Good luck Pauline! If you do have CMT or another kind of PN, it's not the end of the world. Just the beginning of a new one perhaps.
Kelly

To Jack60,
I don't know if Honky has this problem either, and I won't talk bad about osteopathic doctors as I have seen them from time to time. I have them pop my back when it's hurting and "out of place" as they say. But I am living a pheriperal neuropathy and have since I was a child. It's a serious disease and I believe in neurologists for a problem like this one. They too are especially trained in the nervous system. Most of the doctors out there have heard of Charcot Marie Tooth and now days they even know more than they used to. But CMT is a fairly rare and hard disease to treat. I'll stick with a neurologist. Have a good day folks.
Kelly

[Navy_mom_of_2]

Hi Honky,
I just posted a question right after you. I'm asking about knee replacements. In my posting I bring up the disease I was diagnosed with as a child, Charcot Marie Tooth. It is a peripheral neuropathy. It affects the body from the knees down to the feet and from the elbows down to the hands. I don't know about the hips. I knew I had CMT early on because it's hereditary and my dad has it.  So they knew to look for it in me and my brothers. I'm wondering if you might have CMT. Are the arches of your feet really high? Do you have hammer toes (the toes kinda curl in)? You can go to the CMT websites and get all the symptoms. Let me ask you this. Does anyone else in you're family have the same symptoms you have? I don't mean to scare you. CMT is one of those things that you just kinda learn to live with. It's rare but it can effect one's diaphram. I choke and sputter a lot when I'm eating or drinking because it sometimes affects the muscles there. That's what I've heard anyway.
I have been told with CMT that drinking alcohol actually makes the weakness in the muscles worse. So I was told not to drink alcohol anymore. It curious that you would bring up the question about your prior drinking. Do you think the liquor has made your symptoms worse? Anyway, the doctor that answers your questions in this forum so you don't have to take my word for anything.
Good luck Honky!
Kelly