Well here goes on my first post in any forum anywhere; so if I make any glaring procedural errors please feel free to correct me.

This thread is the most comprehensive and useful discussion I have come across in ten years - possibly because I am always doing stuff and research for other people which is actually what brought me here.

I was diagnosed with CIDP in England in May of 1999 and since then I have been taking Prednisilone (Prednisone in the US) I have little doubt that it was alcohol related as I spent 25 years as an aviator in the Royal Navy - and you drink! Particularly after an arrested night landing on the small decks that we had then!!

So I have been diligently taking my 15mg of prednisilone daily and trying to go lower. It appears there is no alternative for me although I am thinking/hoping that the knowledgeable MRSD will jump in and say "Just a minute!" Yes, of course I have developed the inevitable prednisone related osteoporosis and stomach and weight issues; I am waiting on the cataractsin due course!

But what brought me here is my research in the last two days into Human Embryo Stem Cell (HESC) therapy for my T12 paraplegic mother-in-law. During my surfing I found a blog from a lady with CIDP who is undergoing stem cell therapy in China. I have still to examine that further for results but wondered if anyone else may have looked into this as my fingers and eyes are getting tired from all this PC time and I need to go out to repair my tractor and utility cart for a while.

Hi,
I am new and not sure where to ask this question. Does anyone have the link to Dr Wise Young's information on alcoholic neuropathy reversing in 5 years.... that is something I would really like to read. I have alcoholoc neuropathy my self (for the past 4 and a half years). Have stopped drinking, taking Benfotiamine, Calcium, Magnesium, etc. Have definitely seen some improvement. Most of the pain has gone, but still left with th numbness....

murgy

Hi to all the above posters, I am new here and are yet to see a neurologist. I am hoping you are all travelling well and could offer some suggestions to myself.

I am struggling to come to terms with what it believed to be polyneuropathy and fear the future, I want to enjoy watching my young kids grow up and be able to do things with them. Is this possible? How have you all managed to cope?

Kind Regards
Keckie

Keckie, could you tell us more about yourself? How old are you, what kind of symptoms do you have? Do you suspect an alcoholic neuropathy or has it been confirmed?
I have hereditary neuropathy, so have had symptoms all my life, including when my children were younger. My youngest is now 15, I have two grandsons under 3. I was much more active when the children were little, but have had to cut back a lot on what I do.
The more that you tell us about you the more we can help. Also sometimes the participants in older discussions like this are no longer active on the forum. We do have a good core group of people who have been here a long time and who represent a lot of knowledge and experience and are willing to share.
You may get better results if you start a new thread.

Welcome Keckie.

Thanks for your Replies Susanne C and Kitt, I have to wait another month to see a neurologist so nothing is confirmed as yet. I'm not sure if its due to alcohol or my neck and back issues, but the tingling is in both legs and arms and is pretty much constant.

In terms of other symptoms they started a few months back with acing legs and arms going dead during the nigh when slept on side and if sat on hard surfaces such as the floor or toilet or hard seat I would get instant tingling/pins and needles. Then in the last month they include dizziness, foggy brain (cant concentrate), weakness in legs and arms and slight numbness and fatigue. If I lay in one position for a while with my neck elevated I sometimes get double vision, or if I get up at night the oven light looks fuzzy. This has been occurring more regularly now. ABout a year ago I put my back out (cant remember how) and couldn't walk for 3 days, I ask for some scans but they discouraged it, and of late I have increased my gym activities doing personal training and numerous class like pump and boxing. It was after I overdid in a boxing class that my symptoms really ramped up. That night my calves had immense tingling and pins and needles and toes felt slightly numb and my hand shook for 2 days. I thought I had just overdone it and let it go for a week but then things just progressively got worse. I ended up in the emergency room with severe weakness of arms and legs. Because it was in all four limbs they don't believe it is due to a bulging disc and did blood work which has all come back normal, slightly raised inflammation marker but not enough to warrant my symptoms they say.

I also had some xrays done by a chiropractor and this showed my neck curves in the wrong way and there is compression in the lowest part of m spine but hey also don't think this will give me the symptoms I am having.

So I have been kicking myself for all the times I had gone out and had too good a time drinking wine and am extremely stressed and anxious about it. I have had raised heart rate and blood pressure but not sure if this due to the above or my stress.

I am 33 and have a 5 year old and a 3 year old. I took my first Lyrica last night after been extremely concerned about side effects. Susanne if its ok to ask have you had any success with medications?

Thankyou and I will lthink about posting a new thread.

My motor symptoms included being uncoordinated and unable to run from early childhood. Numbness started in my early 30's with my feet, then moved up, I have loss of sensitivity to hip level at this point. I also started then with pains in my legs. Numbness in my hands and arms set in a little later.
I am one of the people who does get relief from Gabapentin, the earlier form of Lyrica. From the beginning it greatly decreased the burning and electrical zaps and allowed me to get some sleep. It did not help the sharp leg pain and I have medication for that. I am able to function, go for walks on soft trails, no asphalt or cement, do light housework ( I have a friend who helps clean), and cook. I have had to take care of my daughter and her toddler when she was on bed rest with the last baby and it was way too much for me, so I understand why you are worried about taking care of your young children. My back problems flare up pretty much anytime I pick up the babies.
Your age and the fact that you are in good physical condition is in your favor. Alcohol in general aggravates nerve issues, so you should lay off, but you have to drink a lot to develop alcoholic neuropathy. The symptoms that you describe are classic neuropathy, but the fatigue and dizziness might indicate an autonomic or other condition.

I did not have a lot of side effects from the medication, but a lot of people do. I wish you were getting more guidance from your doctors. Have you seen a neurologist or had an EMG? They really should be more aggressive about looking for causes at this stage. If it is bilateral there is less chance it is from the disc problems, but the connection to the weightlifting may be significant.

Does anyone in your family have neuropathy? The weakness that you describe is worrisome and should be investigated.

Thanks for your quick reply again, yes I agree I would like to be seen a lot sooner than I am, but with Christmas everything is closing up. I'm getting in on the 14th Jan and will hopefully get all the tests done then. I am trying to get an MRI before the neuro appointment (if he would ring back!). It just seems to have come on so quickly although I realise now I did have some symptom's throughout this year that I did not realise were neuro related.

I am probably clutching at straws but after my Physio asked about when I had the mirena (contraception coil) in and when symptoms started it I realised it was a month after. Since then I've read some links between the mirena insertion and neuropathy, but it is nothing proven. However I have decided to get it removed in 5 days time.

Yes I am so anxious that it is a combination including autonomic, my physio managed to calm me down a bit and have since felt a lot more sane. Neuropathy doesn't run in my family. and I was drinking too much but not sure it would warrant neuropathy, but maybe. On my husbands suggestion I am trying to take it a day at a time and try to keep calm. But my mind has a tendency to run off thinking all kinds of horrible things. I am referring to it as my nightmare before Christmas.

I really appreciate your replies.

Keckie