NeuroTalk Support Groups - We are Alone

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - We are Alone - Studies needed (https://www.neurotalk.org/peripheral-neuropathy/78474-studies.html)

Mystery diagnosis IS all about the Diagnosis!

not in diagnosing anyone! That process in the meat grinder is US and up to US!
One point the show does make is that somehow....the less common medical issues aren't in any general practicioner's repertoire. I liken it to a piano bar player doing only Billy Joel but is incapable of doing Elton John or anything more complex or contemporary.
I was lucky in that I suspected my neuro #1 didn't have a clue nor cared. I am grateful I found neuro #2 and then A big cheese neuro [#3] to get all the tests needed done and treatments on the road. For so many of the folks featured on the show? Some suffer 20-30 years before someone thinks either outside some boxes or looks at 'other' boxes at all to find the real issues.
Wether it is training deficiencies in the basics of medical indoctrinization or a lack of overall 'educating' at those recertification conferences that they seem to go to [and only play golf-I hate golf! Sorry golf lovers] omits the expansion of minds into other areas...It's just that the 'system' has failed us, and miserably.
Neuro issues diagnostics IS a process of elimination! Then it's try and treat with what is available. Do remember that most PN meds are prescribed 'off-label'! Honestly it's all hit or miss and we are the ones that have to experiment.
WE are whole persons who HURT! And that to me is the best way to present your cases. If any physician questions YOUR questions? Or worse, questions that YOU question THEM? Well- Time to get some 'second opinions' if you can afford it! It can and has saved lives. As many here will attest to that fact.
Hugs and hope to all! :hug:'s - j

I started this thread with little hope. I just felt there needed to be more for people like us than is currently out there. I also happened to change insurance plans in January and had to find a new primary MD as my old one did not accept the new plan. I had my physical with my new internist this week. I thought that this doctor would look at me and all my problems and say - oh no..i am getting involved with a woman with all these problems. Thankfully I was SOOOO wrong. This doctor listened to all my conditions, looked thru my records, and spent over an hour talking to me. She believes as i always have, that there is an answer..a root to the symptoms. She promised to be my ally and put together a team of specialists who would "work together" and talk to each other about my issues, instead of each specialist treating their own symptoms. I am excited yet nervous. I am glad to have someone supporting me and coordinating my treatment.. She has run a ton of her own bloodwork and is setting up a plan for me with specialists who will work together to find the common cause and think outside the box. ithink that is the answer to my issues.. there has to be a common thread.. i know i will have to see a new neurologist, rheumetologist, endocrinologist and more, but at least i know feel i will not be alone. I have new hope that i will find the real underlying cause to my neuropathy and excited to have a new md to stand with me. it means coming off the steroids that keep me out of pain, but something i am glad to do if we can find more answers.. those steroids will only kill me anyway.

so looking forward with trepidation to more answers... it may be the md who makes the difference.

Wow! That's great dude! Wish I had an insurance policy that would do all that. Glad to see that there is a doctor out there who is willing to go the extra mile to try and find a cause. Wish there were more of them.

Jay

still pretty scary..the pain i have makes no sense. i am sure most of the mds will be out of my pocket... but again,just not ready to give up

Hi everyone,

Well, what to say - it has been said already :wink:

Here I had put some really cool links, but I am too new to post links, sorry :(

In December 2006 I wrote this:

Quote:

At least since 2004 I have been troubled by dizziness, headaches, tingling in fingers and toes, sweating, vomiting, stomach aches, difficulty in breathing - though I am well treated on asthma meds.

In March 2006 I had a mild flu, in April violent balance problems and vomiting, was told it was virus on the balance nerve, but recent examinations show no problems with my ears. I have been attacked with balance problems and dizziness attacks ever since in waves where I have been falling on my butt and taken falls on walls and door posts with my right shoulder. I fell down the stairs onto my knees. It mostly happens when I don’t concentrate entirely on walking or when I have something in my hands.

On October 15th I was admitted to hospital with pains and numbness and prickling in my right lower leg and foot, during the day it spread to the whole leg, fingers on right hand and the all arm, lips. During the 11 days it has spread to left foot and left hand, tingling in my tongue and pain in the tip of my tongue. At the hospital it was suggested that it might be a physical reaction caused by long time stress. I have been stressed for several reasons in the past two years.

I have developed tremors. It has been there in my right hand all along, only I have dismissed it. Now I get tics/shaking my head involuntary or even the whole body, and the hands when I need small detail things done like buttons. The tremors are there all the time whether visible or not.

I have an illusory body tilt to the left mainly when lying bed. It feels like rolling left in a kayak.

I have headaches, mostly when I try to concentrate too much to make my resisting limbs work.

I had muscle weakness, but I have slowly trained my muscles back into working order, and they do work when I am not too tired.

I still have sensory oddness all over with tingling, burning, prickling, electrical shocks, numbness, sensitivity to heat, especially in the skin, feet and hands. The face is warm and flushing. My face and hands are sweating. Stiffness and cramping of muscles and difficulty in relaxing. Sometimes I get very hungry almost ravenous, and other times I am nauseous and not at all interested in food. My balance is still off, and I have difficulty in walking, it is like walking on ice skates. When trying to stand on my heels, I loose my balance. I have joint pains in toes, knees, fingers and wrists. Sometimes I am out of breath when doing minor things. Asthma is under control. Head tremors and hand tremors are worse when I am tired. Main problem right now is fatigue. I want to do more than my body wants to do.

Tests: Neurological tests, CT scan, MR scan, blood samples, spiral sample, EMG.

Ruled out is MS, DS, aneurisms, tumours, bacterial infection, borelia, blood clots, ear problems, vitamin E deficiency, celiac disease, virus tested for, early cancer, nerve infection, long fibre neuropathy.

Objective finds: normal reflexes, uncertain finger movements and uncertain touch-to-the-nose movements as well as my left foot being unable to feel cold things, slightly elevated spinal protein 0,69, small increase in TSH Thyroid gland 5,09, but a repeat was normal, small increase in two types of white blood cells 11,5 and 8,5, P-ALAT 66.

In response to my question about the significance of the slightly elevated spinal proteins I was told that my body was reacting against something, but it was like a person with high fewer asking why, so they could not tell what caused it.

Diagnose: none so far, but being suspected of some sensory poly neuropathy.

My mother had a thyroid disease, probably Hashimoto. Pills: Eltroxin (Levothyroxin). She also had reumatism, polio as a child, and food allergy.

From articles that I have read autoimmune diseases runs in the family.

So far I have hayfewer, food allergy, asthma and something undiagnosed.

Well, reading all my tests and searching the internet and getting retested for Thyroid disease including antibodies - I finally got the diagnose Hastimoto's Disease and B12 and D vitamin deficiency. My neuropathy is much much better when properly medicated for thyroid problems, but I have persisting neuropathy problems in hands and feet including Carpal Tunnel.

A new little something has occured now, namely Vulvodynia - a new running around to doctors who cannot do anything about it. No known treatment and a diagnosis which just means "pain in the vulva". I already knew that but what is to be done with it???. I have been told that I have a lot more nerve endings and that it probably has to do with my already existing neuropathy, but it has gotten worse in stead of better on my thyroid meds. I have tried all things suggested on the internet for this, but if any of you have any clues, I would be grateful!

Life is wonderful - a little more knowledge to doctors and researchers would make life even more wonderful. Treatment and good wishes to all!!!! :grouphug:

I have posted a new thread under "Women's Health" regarding "Vulvodynia - any help ?" if anyone wish to give me advice about Vulvodynia, which I would very much appreciate!!

I look forward to hearing from you all!

Now I think I can post the links which I meant to post earlier in this thread:

Evaluation of Peripheral Neuropathy
http://www.aafp.org/afp/980215ap/poncelet.html

Why Doesn't My Doctor Know This?
http://www.immunesupport.com/library...M&B1=EM041107C

NEUROMUSCULAR DISORDERS & ENDOCRINE DISEASE
http://neuromuscular.wustl.edu/msys/mend.htm

This one with reservation - I have not tried it out:
http://concernrelated.mitamins.com/N...esthesias.html

:grouphug: