Where do I go next?

[Bev?PN]

I hope you can adivse me. In a nutshell: had digestion probs since 93, autoimmune hypothroidism 4 years (very high level of antibodies), numb bloodless hands in bed, nerve pain, buzzing, pulsating, vibrating and twitching - gradually getting worse over last 4 years. 2 EMG's came back negative so my neuro says he doesn't need to see me & i should go to the pain clinic.

In the meantime - did some of my own research and got my GP to run some tests. B12 213, Folate 187 and Ferritin 13.7 - as I was basically at the end of my leash and felt like I was going around in slow motion! All borderline low - and after I gave my GP an article by Dr Snow on low B12 and neuro probs, my GP started me on B12 shots - now 3 monthly - I also choose to take methylcobalamin 1000mcg, Dr gave me 5mg of Folic acid, and of course thyroxine 150mcg.

I have IMPROVED!
I twitch - but not as much, I pain, but not so much, I hardly vibrate and buzz at all!I feel better in myself.

BUT - I have awful stomach discomfort, fizzing senstion in my throat, every day, a pain in my right side just under the ribcage! I've done lots of research and think I may have gluten sensitivity / malabsorbtion causing all this - antibody test came back negative.

What do I do when my neuro says he doesn't need to see me? I've done so much research that I think I must near the right track and I'm being met with a brick wall.

I got articles on this area - and I must get to the bottom of this somehow! Can you adivse me of how I should go about this and if you think I'm on the right track?

I'm in the UK by the way.

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

Gluten sensitivity associated peripheral neuropathy is well described in the literature but is relatively uncommon. Unfortunately there is no one lab test that definitively says you do or do not have the disease. A careful history and exam with possible intestinal biopsy from a GI specialist can sometimes make the diagnosis.  If you can't get in to see a GI doc or a second opinion from another neurologist, consider self treating by staying away from gluten products (which is the treatment anyway for the disease) such as wheat substances and see if you improve. GOod luck.

[GOLDEN DENNIS]

You may wish to post any questions that you may have at www.neuropathy.org.  I have found it to be a very useful web site. They ask you to join, but I have never received any sort of solicitation for contributions in the approximately 18 months or so that I have been a member.  There is also another web site, www.braintalk.org with useful info.  go to the specific conditions site that includes peripheral neuropathy and ask any question there.  Good luck to a fellow PN sufferer, Dennis

[Bev?PN]

I should've added that I had an endoscopy last year and was told that the lining of my duodenum is lumpy rather than smooth. This was found to be caused by ectopic stomach lining cells. So I wondered if this also might have something to do with malabsorbtion.

thank you Dennis,
I thankfully have already found the two sites you mention and boy am I glad! I was beginning to think it was only me - at least now I know there are other people out there getting the same odd looks from their Dr's as they describe their symptoms etc.
Kind Regards
& the best of health

Bev

[amm]

i find that it is hard to get any help with this  i hurt so much and all the drs, want to give me pills and more pils, tring to get ssi and they will not help . my left side hurts all the time , so where do you go have you had drs, look at you like you crazy and say oh you will be ok in time .