Hi,
I'm a new member and wanted to give an introduction and overview of my condition. I would love to hear any opinions or recommendations that you would be willing to share. Here goes:

I've basically been a healthy and active person most of my life. My biggest health issue was drinking 4+ bears a day for over 20 years. On weekends I would often drink more than that. I grew up in a German family where drinking "casually" everyday was a normal way of life. Not trying to make excuses. I realize now (way too late) that this was a very foolish thing to do. The other issue was acid reflux. I took Prilosec for about 10 years. I stopped taking it about a year ago after changing my eating and drinking habits.

In September of 2009 I started experiencing short term memory loss, mild dizziness and swallowing issues that wouldn't go away. I was recovering from a particularly nasty sinus infection at the time. I first saw my PCP who did a basic blood test ( check for anemia, etc) and then moved on to the ear nose and throat doctor. Had some ear fluid which was taken care of. Next, they checked my inner ears, etc. and performed a VNG test. Nothing was found.

Finally about 9 months later, I was referred to a neurologist who had an MRI with contrast done. This also came up normal. He basically told me I was ok and to come back if the symtoms got worse.

I decided to go back to the ENT and have an espoghogram done to check the swallowing issues. Turned out normal. I also had an upper GI done back in early 2009 which turned out fine. This made me feel better by ruling out cancer.

The dizziness and swallowing issues came and went. Short term memory loss was constant. After I while I accepted this and was willing to move on. Unfortunately, my sypmtoms starting changing for the worse starting in my feet and later in the hands. I started my research and incorporated the following:

Methyl-B12- 2 x 5000 mcg sublingual under tongue each day
Metafolin 1x 800 mcg a day
SAM-e 200 mcg a day
B-right Jarrows 1 per day
Good multi-vitamin
Salmon oil 4 grams per day.

I noticed an immediate and very powerful effect from taking the B12. It made me feel hyped up for the first few weeks. This effect was amplified several times over when I took the Metafolin with it. The Metafolin gave me bad diarrhea for about a week and I cut the dosage down until that got better. Since taking these supplements I can safely say that my short term memory loss has gotten significantly better. I feel I was deficient in some or all of these nutrients due to alcohol use combined with Prilosec. I have a long way to go still to make up for the alcohol use over the last two decades.

August of 2010 I started experincing tingling in both feet and random muscle facilations. The tingling changed to partial numbness over the course of a couple months. The neuorogist finally agreed to do blood work. Check for diabetes, B12, folate, thyroid, liver disease, kidney disease and mutiple myeloma. Everything tested clear. B12 was over 1500 and folate was 17.4.

I had a nerve conduction test and EMG done in January of this year. Daignosed as mild to moderate chronic sensory distal axonal symmetric polyneuropathy with small fiber modalities. He never bothered to see me again or have me schedule an appointment. The nurse called to let me know. I requested the records which were given. He said it was alcohol related, but admitted he was not 100% sure. PN was not his field of expertise. My drinking at this time consisted of 3-5 beers a week.

In February of this year I was doing pull ups and experienced a mild loss of muscle strength in my left arm after excercising. Went to a chiro who discovered C5 C6 cervical issues from an X-ray. Adjusted my neck and the arm strength came right back. One MRI later they found mild degeneration in the cervical spine. I started taking the following at this time in addition to the previous items:

Benfotiamine- 4- 250 per day
ALA- 1- 600 mg a day
ALC- 2- 500 mg a day
green tee extract- 1 with each meal 3 times a day
Super BIO curcumin once a day
SAM-e 400 mcg a day up from 200

By mid June of this year I quit drink entirely. I read articles where they said complete abtinance was required for improvement or at least halting the progression. Its been 2 months now of complete abstinance. Despite this my PN has progressed somewhat with new manifestations the last couple of weeks.

I now have scalp tingling with very brief burning sensations in face. Feet feel very cold on and off during the day. Hands as well. I get odd sensations like cold or sometimes hot rain drops sparodically falling on me. Muscle facilations on my face or lip once or so a week. Sometimes brief stabbing pains in one spot of my foot.

Typically my symptoms go through cycles where they stay mild and then flare up. Now new elements are being added such as on my face and scalp. I had a 5 week period of mild symptoms now followed by a flare up for the last two weeks. These cycles have been very typical during my progression.

I'm planning on finding a new neurologist specializing in PN. I'm not 100% convinced that this is entirely alcohol related. That being said I will not drink anymore regardless. Like everyone, I want to address these issues and discover the underlying cause.

I exercise 6 days out of the week, watch my diet carefully and take the supplments religously. I was really hopeful that my symptoms would stabailze with no alcohol use and a healthy life style.

Has anyone with alcoholic neuropathy experienced these same manifestations after abstinance? The facial and head sensations are very disturbing since they don't seem to follow the classic signs of A PN. Any suggestions or feed back would be appreciated. Thanks!
Ron

Reading your post, the first thing I did think of was nutritional deficiency, possibly secondary to your alcohol consumption--though people do vary widely in the degree to which that would result in nutrient malabsorption. B12 deficiency, in particular, can result in very weird parasthetic nervous symptoms, both peripherally and through degeneration of the spinal cord. I'm glad you've been supplementing, but it might take a long time to repair damage (to the extent it can be repaired). You can also experience weird symptoms as nerves repair--and these are not usually distinguishable from those of worsening neuropathy except in long-term retrospect (many of us keep symptom diaries for comparison over months/years).

It's very possible the Prilosec contributed to this--we need stomach acid to break nutrients out of food, and you wouldn't be the first to have acid blockers result in malabsorption. We do produce less acid as we age, and this compounds the possibility.

But, then again, there may be other issues. And it does not sound as if you've had a really comprehensive work-up. Part of the problem is that symptoms of problems with the brain and spinal cord can be exactly mimicked by those of the peripheral nervous system, so investigations can be costly and time consuming.

Many of us use the Liza Jane spreadsheets (www.lizajane.org) to track our test results and to suggest more comprehesive testing to doctors--the spreadsheets were designed to include all tests for possible nerve-affecting conditions that a large number of us could think of--worth taking a look at, to compare with what you've had done.

Glenntaj,
Thank you for your reply. I have down loaded the Liza spread sheets and I'm filling them out. I agree that more tests should be performed. I hope to find a new Neurologist that is more proactive regarding my circumstances.

I have an appointment with my primary care physician next week. I will ask his opinion on this saying that I'm looking for a second opinion. Omaha has some very reputable medical facilities present and I'm hoping that there are doctor(s) available locally who specialize in PN.

As a side note, I plan on having a sleep study done. I suspect I have sleep apnea due to heavy snoring and waking up tired even after a getting more than 8 hours of sleep. My sister was recently tested and had a severe case. Suposedly one of the worst they had seen. I don't think this is my root cause, but every little bit helps in terms of finding a primary or secondary cause of this condition.

I'm still very interested in knowing how other people did after stopping alcohol consumption. In my earlier stages of awareness about a year ago or so I stopped drinking for a couple weeks and then started again. I didn't notice much of a difference when doing this. On some of the posts I have read about others who had worsening symptoms right after drinking only a single beer or glass of wine. This doesn't happen to me. I almost wish it did. I would then be sure what my primary cause of PN is.

After being hospitalized for pancreatitis, I stopped drinking for 5 years.
It was during this hospital stay that I was Dx'd with PN for the first time.
I had been self medicating with alcohol and had overdone it.
I'd had the same sx for years, but my PCP in the HMO was a real incompetent dud saying it was in my head cause he hadn't a clue. I fired him and changed insurance. Now I'm on Medicare with supplemental, and choose whichever doctor I wish.
When I drink now, sometimes I can feel it in my feet after one drink- but other times not.
I now limit my consumption more reasonably.

Being sober you will feel more of what is going on in your body. My husband has been sober for several years and the PN is now showing its ugly side and seems to be progressing. Nervers take along time to regenerate, some may never regenerate. Why it is happening to him now? ....well it probably was there all along, but the damage just continued on as the rate of repair cannot kep mup with the damage that was done or ongoing. I hate to think how much worse the PN would be if he was actively drinking! My husband had reached the point where he was about to go on the transplant list, but his liver regained function. We were very lucky.

Thanks to all for the input. It is much appreciated. My symptoms seem so weird. A few days ago my my face and tops of my hands suddenly felt hot/sunburned and then it went away 30 seconds later. I'm experiencing hypersensitivity on my head. When I sweat, the drops tickle my face like a feather. The symtoms ebb and flow. It's different for everyone. Time will tell if I'm healing or not.