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awlright 07-11-2011 02:41 PM

Re: Seeking opinion regarding cause of peripheral neuropathy
Hi Nemotin, sorry to hear you're going through such a difficult time. Truthfully, I cannot add much that you have not already heard from other very well informed sufferers on this board. Nevertheless, there are some aspects to your condition that do raise significant questions in my mind. Your paresthesia, fasciculation, and vestibular symptoms are consistent what some autoimmune disorders present with. Given your medical scientific background you no doubt know that autoimmune conditions do bring on PN and that there are over a hundred types of PN. As to the causes, they are as impossible to pin down as what kind of PN you may have. More than a third of people dx with PN are found to be idiopathic. Maybe that means that 30% of neurologist should be doing something else. I don't know. Having no medical background I'm not going to guess that you may not have a prediabetic condition, although it sure doesn't sound like it. But let me turn to what your post does point to.

You say you have 8 beers but no hard liquor. My reading indicates that a beer in respect to alcahol=1 hard shot of liquor, so that's 8 hard liquors you consume in that social situation. You say you don't drink at home. Why not? Next I would turn to your education. At present you have to be under a good deal of stress as you approach your docterate in biology. I know the feeling, although mine is in the humanities and did not require the intellectual demands yours most. Research in biology is extremely demanding. Put all of this together and it may be nothing more than one of those things that will be over as you settle down to your professional life. Please believe me, I'm not saying it's all in your head by any means. I'm only suggesting that you're in the process of establishing your future life style, professionally, socially, and economically. Big change, big stress. I'm hoping that's all there is to it.
All the very best of luck, Awlright:wave:

arfindlan 09-10-2011 08:12 PM

Re: Seeking opinion regarding cause of peripheral neuropathy
Hi Matt,

My story is similiar to yours. I was in perfect health at the age of 24, and 3 years later it's still getting progressively worst. Where did you order the chelatin from? I would like to give this a try. My dentist states that they haven't administered Amalgam fillings. Could the fillings still somehow be the cause?

longgrub 09-20-2011 09:56 AM

Re: Seeking opinion regarding cause of peripheral neuropathy
Matt, I like you, have done a lot of research. Neural damage may be caused by a host of things; genetic, alcohol, diabetic, from an accident, etc.
Mine was apparently passed on to me by my mother. I have pernicious aenemia. The condition is one whereby your body lacks the ability to absorb
B12. A chronic lack of B12, if untreated, will result in nerve damage that manifests itself as searing pain or numbness in the extremities, a loss of sense of Balance, and a weakness in the legs.(Neuropathy)
The chronic lack of B12 can be treated by injections at regular intervals at whatever level you require to fully replace B12. I take 1 cc of Vitamin B12
(Cyanocobalamin) once a week. It has made a difference for me. I still have some numbness and tingling but I have not yet had any of my earlier painful symptoms reappear.
You can be diagnosed for pernicious aenemia by a Shillings test, a test that establishes the level of absorbed B12 in your system.
Like you, if I drink alcohol, my neuropathy gets worse.
Good luck! Longgrub

June89 03-04-2012 03:10 PM

Re: Seeking opinion regarding cause of peripheral neuropathy
hi Bronze Aussie, I have had this pain for about 2 years. You describe the pain so perfectly, its the same as mine & others in this group. Please hang in there! I have oxycodent for breakthrough pain, have you tried this? You are a important person to many people. Suicide is not the answer. Remember you are not alone, talk to us.

jujuz 05-28-2012 06:57 PM

Re: Seeking opinion regarding cause of peripheral neuropathy
Hi Matt,

I have had PN for a good 15 years with worsening in the last 3 yrs since my systemic lupus dx. I also have developed cranial neuropathies.

It is interesting to me that you mentioned cranial nerves in your post. My PN is caused by lupus although it isn't a sure thing that the cranial neuropathies are also caused by lupus. Seems that's a big jump for doctors to take. I have trigeminal neuralgia and geniculate neuralgia and get burning mouth syndrome and distortions in taste and smell, all cranial nerve related. My AIC's have been within normal limits for the last 14 yrs. or so.

I am immunocompromised, thanks to lupus so I get ALOT of viruses. I have big problems with herpes simplex 1 and coxsackie. I get them in my nerves and they cause muscle weakness and rashes (vs the usual cold symptoms) I have a hunch that my cranial neuropathies are caused by viruses as well. I've had Bells Palsy twice now and they KNOW that comes from the herpes simplex 1 virus and from herpes zoster (shingles, chicken pox) There are alot of studies going on that involve the complicated relationship between neuropathy and viruses.

You may want to do some research in the area. There are tons of abstracts and studies neuropathy and viruses.

Just a thought. Many HUGS, and your not alone out there Matt. We're here..just keep reaching out. Get your symptoms treated and keep at it.

Love Julie

coolboot 12-11-2012 07:22 AM

Re: Seeking opinion regarding cause of peripheral neuropathy
Matt, I too am trying to discover the cause of my "idiopathic small fiber peripheral neuropathy." My journey started with numbness in the soles of both feet back in 2001 and dramatically progressed up through the feet, ankles, lower limbs, fingers, hands, wrists, lower arms when I started training for running a marathon in 2001. I was 72 years old at the time. After completing the marathon the numbness had become so bad that it felt like I was wearing tight heavy stockings when I was barefoot. No pain, thank god, but numbness progressively advancing all over my entire body, with numb tingling scalp, cheeks, tongue, buttocks, etc. All over me, just numbness and tingling. The doctors sent me for all examinations and lab tests known to mankind and they could discover no cause. I am not diabetic, no vitamin deficiencies, no neurological damage found, no spinal damage, no low B-12, no Celiac or Lyme disease, no, no no no. They eventually told me there was nothing more they could do and to this day I still am experiencing overall body peripheral numbness and tingling. All over my entire body, but most pronounced in the feet, legs, and hands. I have come to the conclusion (unverified to date) that the cause may be the running - the pounding on my spinal column which can be hard on spinal discs, especially at my age where they have begun to degenerate. My neurosurgeon, years ago, told me to stop running! Then I ran a marathon. What can I say?

I now run no more. I just watch with envy those younger than I who are still running. I hope they are not doing damage to their spinal column and nervous system like I was doing! My advice to you is to stop running. Just walk. Speed walk if you like. Then secondly, take mega doses of Vitamin C (to rebuild tissue collagen throughout your body) and lots of Vitamin B-12 (sublingual 5000 mg daily) or go in for high dose Vitamin B-12 injections. You may find some relief to the numbness after a time, but once damaged, it's not easy to rebuild the damaged mylan nerve fiber.

Also, I would advise you to stop all consumption of all wheat and dairy products. And no more sugar in anything. It's poison and it's addictive. Wean yourself off all foodstuff containing sugar! Eat fruit and fresh vegetables.

If you do all these things, you will probably note improvement in your well being and hopefully reversal of the neuropathy over a length of time. But, most importantly, stop running! It damages the knee joints and the spinal chord. You will suffer for it if you continue to run (except of course on those occasions when you're trying to catch a bus!).

howardman652 12-19-2012 09:28 PM

Re: Seeking opinion regarding cause of peripheral neuropathy
hello sounds like you have fibromeralgia try takin lyrica twice a day also do the over the counter aleve 220 mg onec a day and then leave me a note in two to three weeks of you being on this regiment of imflamitory drugs how have you been have you ever have surgery anywhere or could you of hit your head somewhere

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