What is happening to me? Help
 

:DHi all! I have been on a quest since early January to find out why I have been feeling the way I have been. Been to 3 neuro docs who say all of my tests, emg, mri, cat scan etc. show no signs of inflammatio or disease. Januuary this year noticed tingling in hands and feet, then in legs, arms, all over. Twitching muscles and involuntary jerking especially while laying still. Also, tongue tingled....oh so many more things.....still docs say nothing. Can anyone help?[/CODE]

Hello and Welcome to NeuroTalk!!
 

apprentice,

:Wave-Hello:Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, welcome to a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Check into the following forum, there are a good number of friends there to assist.

Peripheral Neuropathy:

http://neurotalk.psychcentral.com/forum20.html

Looks as though you are finding you way around. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:

Darlene :hug:

Hello apprentice!
 

Welcome to NT! :hug:

I'm sorry about these struggles you are facing. The good thing is that there's alot of great support and information here.
What you describe sounds exactly like Peripheral Neuropathy. Darlene has given you the shortcut link to get you there.
Definitely check it out!

Make yourself at home! This is a very warm community.
You certainly are not alone....

Caring,
Rae
:grouphug::grouphug:

**********

Hi, I'm new here too. I've been recommending B6 for years for people with peripheral tingling. It was actually a doctor who told my mom about it years ago as a way to avoid carpal tunnel surgery. If you're not remembering your dreams, take 100 mg of B6 before bed. As to the mouth tingling, it could be a food allergy or you could be REALLY deficient in all the B vitamins. It can't hurt you to take a high dose multi-B in the AM.

Muriel Dr. Mom

Thanks much
 

Hi, thanks for your words of encouragement and advice. Havent been checking in lately.....but still struggling. Thank you.

Just wanted to say "Hi" & "Welcome!" I am new here as well, but not new to symptoms of numbness, tingling, muscle twitching and random jerks at rest. So you are not alone!!

You would think that time and doctors could give you an answer to your problem, but sometimes they don't. I have had every test under the sun going on 10 years now (only the last 4 have been progressing in intensity.) I have a diagnosis of idiopathic peripheral neuropathy. Which means they can measure that my peripheral nerves are slower than they should be, but they don't know why. My first several EMG/NCS (measures muscle and nerve reaction times) were considered normal, even though I had symptoms.

With every test normal for you, I would suggest you check out the Peripheral Neuropathy stickies concerning other blood tests, like B12 and vitamin D. Hopefully one of your docs have already checked a metabolic panel and thyroid studies, diabetes testing etc. Nutrition and supplementation are very important as well, lots of information here!!

:hug:

Nice to meet you!!
 

sounds like polyneuropathy to me I would get a second opinion because if it is its painfull and you will need help. Best of luck

Hope not
 

I know it sounds like neuropathy to me also even though the docs are saying its not. Thankfully, Im not in much discomfort but my mind can only wonder what is happening and sometimes I think the worst. I have seen a few neuro docs who have done a few emgs, but so far nothing detected. With my legs and feet and hands and other symptoms making me feel the way I do, I will continue to search for answers. Thanks for your support.

AP

Very familiar!
 

Hi, your story sounds very familiar to me! I started tingling in my arms nearly 4 months ago now which has spread ALL over my body including my toungue roof of my mouth and into my throat. Sometimes it is a stabbing pain sometimes freezing never totally goes at best it just kinda hums/buzzes. I'm in the process of waiting to see a neurologist the NHS system here means I have to wait 2 months as there is a waiting list. My doctor has run some bloods which I get the results from on Wednesday.
How are things going for you, any answers yet? Has your doctor diagnosed periferal neuropathy? No one can explain my toungue tingling - sometimes I think they think I'm making it all up and am a bit bonkers!
I am on Gabapentin 3x daily which helps a little especially at night when its at its worst.
I hope you get some answers, keep me posted I'd be really interested to see how things go for you.
lgr6616 xx

You're Not CRAZY!
 

... sometimes it can help just a little to know that! I had burning, tingling, numbness spread over my entire body within a couple months, my tongue, gums, palate, throat too. You have peripheral nerves everywhere, really. I think the facial symptoms I have involve the trigeminal nerve. Mine symptoms are likely from a virus I had. Make sure when you have blood work they test for viral conditions and autoimmune, too. I'm so sorry you are unwell. When mine first started I was panicked because it was so unusual and progressing. I had never felt anything like it in my life. Then, to have it suggested you're stressed out and that's what's causing your symptoms only makes you angry on top of everything, wondering if you're getting proper care for a progressive condition because doctors just think you need to "take a pill" and calm down.
Blessings for comfort:)

Hey people! What's up.I've posted on here before fearing i have ms Hey..maybe i do,i just wanna discuss my symptoms, again Here they are: one area just below my shoulder blade on my back has been on and of, going numb, feeling like it's Dry or something, yet super sensitive to my shirt touching it, or sometimes a crawling sensation I get these strange goosebumpLESS chills in my legs and arms Very very faint pins and needless feelings in my fingers at times, very faint! Shooting pains up my right leg, with no apparent cause, they come and go I will admit i have anxiety and I've read it can do some crazy stuff to your body I get the heart drop feeling when somebody scares you Thats follwed by a kind of fight or flight response that shoots down my arms.happens for no reason I am fearful i have ms..i know something is definatly wrong with my nerves When i pick my shoulders up, like in a shrugging manner, up to my ears and let them drop,i get what feels like my nerves jumping in my ring and pinky fingers!! Yuck, this is ask so strange.i get the random buzzes and faint electric zaps, wherever and whenever. I'd like somebody to point me in the direction of what could possibly be wrong with my nerves! Please! I'm a 20 year young male with no family history of MS. Does ANYBODY knpw what im going through!?!?!?!?!

Hi a;;rentice
 

Welcome to Neuro Talk. It does sound a bit like PN. Seek out a physician that specializes in the "whole person" I found a physiatrist, her specialty is first in pain, then the "whole body" approach. You need to have your B12 levels checked. Sometimes low B12 can cause PN. I am on a host of different supplements that have helped over the course of this past year. You need to find a doctor who is in your corner, who knows what this is, and will support your efforts to get some relief. There are lot of good physicians in NY. Maybe someone one this site can give you the name of a good specialist. I wish you all the best. ginnie:hug:

Hi apprentice
 

Tried to correct my spelling....sorry for the above....ginnie:hug:

Not yet
 

Hi LG...nothing yet. Actually I am waiting for my lumber puncture appt. Though Im not sure I really want to do it since the docs so far havent found any evidence to suggest a need. The last doc told me he doesnt expect to finD anything, so Im not too sure I will get it. Problems is, symptoms persist with no answer to why. I really dont know what to do...I feel so nasty during the day...and my feet and legs are feeling like they are deteriorating, though thankfully I can walk. Sorry to hear about your issues and trust me I have twitched and tingled any/everywhere over the last year. I take cymbalt 30mg...not sure how much it really helps but thanks so far Im not in excruciating pain. Please hang in there and drop me a line.

AP

Heb, thanks for the note..yes...evry doctor I saw told me that i was anxious, worried, etc..BS...i admit i was panicked but we know that it feels like ants crawling, tingling everywhere, twitching like crazy, hot one minute, cold the next, hungry, in fact starving every morning...oh my god, i dont think there was a sensation that i didnt have...mucchhh worse then, so I know wha you mean. Hang in there cousin and drop me a line.

Hi all, I hope everyone has been feeling at least decent since my last visit/post. An update is this: Had a few more MRI's done last week. Entire back...lower, middle, neck. Then had another NCS/EMG. Doctor wants me to get ton of new bloods done...will be doing this week. Meantime, he said the emg etc. looked totally normal. He said the MRI's werent too worrisome, saw a little disc issue..but said nothing that warranted an immediate call to get me to a surgeon. Said he wants to see me back in 3 weeks to go over all tests..said I am still basically a mystery case.

When I meet with him, I want to compare all my MRI's to see if they look exactly the same or if there is degeneration occuring..what are your thoughts?

Hi..Thanks for reading and I know you are not bonkers! How is the gaba treating you these days? Tingling sucks...slightly more pleasant than pain though...thats for sure.

Just as an update, I am scheduled for my spinal tap on the 20th of this month...really curious to see what it shows...will keep you updated. Have you had a tap done?

Hi there Welcome.

You might want to check your B-6 level before you start dosing with B-6. Too much can actually cause the tingling and nerve damage. Normal B-6 levels are 2.1 - 21.7. If you can access your blood work and post some results people will give you lots of good info.

Take care, Melody