Hi, I'm desperately looking for some advice or guidance relating to my peripheral neuropathy.
Due to a new system at our local doctor's surgery it is very tricky to get answers to what to me seems like a complex problem.
I was vaguely diagnosed with alcoholic neuropathy a couple of months ago over the phone (even though he said I didn't drink enough). The doc prescribed high dose B Vitamins and told to reduce alcohol consumption and see if I improved. I did seem to improve but I wouldn't say that it has been consistent and I feel as though this has been going on for maybe much longer than I realised but that I did not connect any of the symptoms together. It seems to me that I get phases when the symptoms are much worse and cannot necessarily be attributed to external causes.
Symptoms present as follows:
- PN in form of tingling and buzzing in hands, feet and other areas. Also weakness in hands and arms especially in the morning causing difficulty with fine motor skills.
- Seemingly blocked ears, tinnitus, pressure/whooshing blood near ears.
- Foggy head, inability to concentrate, frustration and anger.
- Inability to get out of bed without a long spell waking up and gaining strength.
- Rapid hair loss
- When it get's it's worst a spell where I feel as though I will faint (including weakness and fever) even if I have eaten well that day. Eating alleviates this.
- I have had a scaly purple tingling rash on my hand followed by permanent numbness of the skin on two separate occasions. The rash never lasted long enough for the doctor to see.
I have had numerous blood tests including but not limited to: Thyroid function, iron levels, B12 deficiency, Lyme disease, Lupus (maybe more, I must ask the doc for whole list). All tests have come back fine and I continue to take supplements including Niacin, Thiamin and Iron. I take no other medication other than paracetamol. I drink a small amount of beer or cider almost every night and have done for years. I am in my 20's, eat a healthy veg-heavy diet and have a 2 year old child.
Research is taking me 'round and round in circles and I simply want to know if others have experienced a similar pattern so I might be able to steer my research and try and make sense of it!
Thank you for taking the time to read!
Written by
Peeks
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Hi there, to be afflicted with your symptoms at such a young age is terrible.
I am some decades older than you and I have had all your symptoms and others except for one .. I haven't had a rash.
I also have perpheral neuropathy but with no known cause for the last two years, and suffer from nerve pain in my legs and hands particularly at night.
The doctors wanted me to take mind altering drugs to alleviate the nerve pain, but I just couldn't hack them.
So if I tell you how I manage my symptoms, perhaps it may help you a little?
I take one 150mg of Benfotiamine 150, per day this is a derivative of Thiamin, but oh so much better, you could read up about it, I also take vitamin B12 one 150mcg per day, every day, and because this can cause a build up of unwanted additives in my liver and kidneys I make sure that I take to totally natural pure B12 suppliment, this leaves no residue, the excess just flushes away.
Paracetamol for the pain when it gets too bad, and thats about it.
If I get nerve pain in my legs, (not too often now at all) I spray them with a can of Ice Cold aerosol spray .. the kind of cooling spray you would take on holidays, that has an immediate effect. If my hands get too hot I put them under the cold tap for a while.
You will find your own way around your problem I think.
I should add that I only drink alcohol at Christmas or birthdays and such, but it certainly makes EVERYTHING worse for a while.
Thank you I am glad to know the Bvits help! Also, I think that stopping drinking or cutting down to absolute minimum should be something I do for a longer period to see if it really helps then get a gauge of a more baseline health xx
Your doctor may say your blood test results are find but if you look on both the Pernicious Anaemia section and Thyroid UK section of Health Unlocked your will find lots of people who have been told the blood test results are OK. Doctors seem to diagnose by numbers not by how we feel and a number of people on both these sections have many of the symptoms similar to yours and have been self treating to gain improvements after being told their blood tests are fine.
You are legally entitled to have copies of all test results with ranges. Always good to have so you can monitor your OWN progress and check what has been missed.
May I suggest you research Tension Myositis Syndrome or The Mindbody Syndrome. I have had RLS for 20 years and severe ankle pain during same period. I read a book on the above. My RLS has gone and this week I have walked around 4 miles per day without ankle supports or any pain. I have learnt about the natural processes in the body which cause chronic pain. You might like to watch a YouTube video called Chronic pain is an epidemic of fear. The video mentions Writing a journal. I have been writing about bad memories- what happened and how I felt. I expressed anger. I did not hold back. I cried for 3 days but felt much better afterwards. Now when I feel pain I ask myself what have I been thinking about and what has just upset me. I tell my pain I know that it is real but it’s a distraction from emotional pain and that everything will be okay. The pain disappears. I know it sounds weird but if you are interested I can give you more information.
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