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Dizzyness, Twitching, Numbness, Neck Pain...You Name It! Help/Advice?
My symptoms are:
Twitching, pretty much body wide
Dizziness, balance is "off"
Numbness, Tingling - feet (sometimes up to ankle, arms)
Bug Crawling feeling - mostly back, sometimes legs
Docs note all reflexes to be "brisk" (legs a bit more than arms)
Nerves to arms/legs feel charged all the time, jumpy...when it's really bad my hands and/or legs will tremor
Tons of neck/arm pain
Tongue, gets sore, red, feels too big sometimes - no problems with swallowing or with speech
All of the above waxes and wanes, moves around. One day my biggest complaint might be a numb foot (which I can tolerate fine), the next day it's this overactive nerve feeling (much harder to tolerate), or my tongue will bug me for a couple days, then gets better though never fully gone. All symptoms there to varying degrees every day, changes up all the time.
Prior to onset of neuro symptoms 10 months ago, I had a C6-7 herniation (no surgery), they said is was a "large" rupture, after 4 months of slow pain improvement, pain worsened and neuro symptoms started. I had another MRI of c-spine showed some improvement of rupture. My neck/arm pain is worse, now all of this neuro stuff. Could more be happening there? I have read about neck issues really messing with the nervous system. Could this be the culprit? I've tested clean on everything - Brain MRI, Lumbar Puncture, EMG/NVC, lots of bloodwork, Thoracic and Lumbar MRI. My nerves feel like they're almost buzzing all the time, it's been horrible. I don't know where to turn at this point. Thanks for ideas/advice.
Twitching, pretty much body wide
Dizziness, balance is "off"
Numbness, Tingling - feet (sometimes up to ankle, arms)
Bug Crawling feeling - mostly back, sometimes legs
Docs note all reflexes to be "brisk" (legs a bit more than arms)
Nerves to arms/legs feel charged all the time, jumpy...when it's really bad my hands and/or legs will tremor
Tons of neck/arm pain
Tongue, gets sore, red, feels too big sometimes - no problems with swallowing or with speech
All of the above waxes and wanes, moves around. One day my biggest complaint might be a numb foot (which I can tolerate fine), the next day it's this overactive nerve feeling (much harder to tolerate), or my tongue will bug me for a couple days, then gets better though never fully gone. All symptoms there to varying degrees every day, changes up all the time.
Prior to onset of neuro symptoms 10 months ago, I had a C6-7 herniation (no surgery), they said is was a "large" rupture, after 4 months of slow pain improvement, pain worsened and neuro symptoms started. I had another MRI of c-spine showed some improvement of rupture. My neck/arm pain is worse, now all of this neuro stuff. Could more be happening there? I have read about neck issues really messing with the nervous system. Could this be the culprit? I've tested clean on everything - Brain MRI, Lumbar Puncture, EMG/NVC, lots of bloodwork, Thoracic and Lumbar MRI. My nerves feel like they're almost buzzing all the time, it's been horrible. I don't know where to turn at this point. Thanks for ideas/advice.
Have you asked your doctor about a B12 deficiency? I do & a lot of your symptoms sound very familiar to me. I have numbness, neck/back pain and balance issues. I copied this list from healthline...
Sensation of pins and needles in feet or hands;Alternating constipation and diarrhea; Stinging sensation on the tongue or smooth red tongue;Substantial weight loss;Inability to distinguish the colors yellow and blue;Tiredness;Paleness;
Loss of hunger;Altered sense of taste;Confusion;Depression; Impaired sense of balance, especially in the dark; Ringing in the ears;Cracked lips;Yellow skin;Fever;Inability to sense vibrations in feet or legs;Dizziness when changing to standing position
If you go to different sites, you will see a little variation in symptoms, but my doctor told me that the most classic sign is the red tongue. It is easily treatable in most cases.
Good Luck!!
Sensation of pins and needles in feet or hands;Alternating constipation and diarrhea; Stinging sensation on the tongue or smooth red tongue;Substantial weight loss;Inability to distinguish the colors yellow and blue;Tiredness;Paleness;
Loss of hunger;Altered sense of taste;Confusion;Depression; Impaired sense of balance, especially in the dark; Ringing in the ears;Cracked lips;Yellow skin;Fever;Inability to sense vibrations in feet or legs;Dizziness when changing to standing position
If you go to different sites, you will see a little variation in symptoms, but my doctor told me that the most classic sign is the red tongue. It is easily treatable in most cases.
Good Luck!!
LP's (Spinal Taps) are positive in very very few cases for Lyme disease. Bloodwork is also very inaccurate, many many false Negatives, according to the doctor here also when I posted with many sinilar symptoms.
I eventually Saw someone who understands Lyme, tested positive and started treatement, also seeing gradual improvlements.
Good Luck
Shangs
I eventually Saw someone who understands Lyme, tested positive and started treatement, also seeing gradual improvlements.
Good Luck
Shangs
You know, I don't even know why doctors even test spinal fluid for Lyme. I rarely hear of someone having a positive spinal fluid test.
Apparently you already know that other Lyme tests are pretty unreliable, too.
If you need a good place to search for information on Lyme, there is a lot of information over at http://flash.lymenet.org/ubb/ultimatebb.php
It is a discussion forum, but there is also access to many articles, help with finding a specialist, and other information there.
Best of luck,
Tracy
Apparently you already know that other Lyme tests are pretty unreliable, too.
If you need a good place to search for information on Lyme, there is a lot of information over at http://flash.lymenet.org/ubb/ultimatebb.php
It is a discussion forum, but there is also access to many articles, help with finding a specialist, and other information there.
Best of luck,
Tracy
Thanks for the input. I, of course, have been tested for Lyme through bloodwork and spinal tap. Is a spinal tap test also not so reliable, do you know? Anyway, I will definitely explore this option as well. Thanks again for the ideas.
I think Lesley gave you good advice. Many people with Lyme present with mostly neuro symptoms. And it doesn't matter if you never saw a tick or remember a bite or rash - less than 50% of people do.
Here's a "short list" of common Lyme symptoms (scroll down a bit):
http://www.lymesite.com/is_it_lyme.htm
It might be worth checking out.
Tracy
Here's a "short list" of common Lyme symptoms (scroll down a bit):
http://www.lymesite.com/is_it_lyme.htm
It might be worth checking out.
Tracy
Hi,
Just wanted to give you my opinion and my own story. For two years I suffered from almost all the same symptoms. Muscle twitching, muscle jerking, buzzing like feeling in my legs and body, my legs got very weak and I became really sick. I have seen three neuroligists, one from the Leahy Clinic in Boston and a MS clinic in Halifax. All my testing has been clear ( MRI'S, evocked responce and Lumbar puncture) Noone could find anything wrong with me. I then googled Lyme disease (even though I had been tested and it was negative ) and found I sounded to much like lyme to ignore it. Long story short I found a Lyme specialist and was dx with lyme disease. I have been in treatment now for three months and feel I am 70% better. I am so glad I went ahead and had this testing done and found a doctor who could help me. If you want anymore information feel free to email me.
***@****
Good luck,
Lesley
Just wanted to give you my opinion and my own story. For two years I suffered from almost all the same symptoms. Muscle twitching, muscle jerking, buzzing like feeling in my legs and body, my legs got very weak and I became really sick. I have seen three neuroligists, one from the Leahy Clinic in Boston and a MS clinic in Halifax. All my testing has been clear ( MRI'S, evocked responce and Lumbar puncture) Noone could find anything wrong with me. I then googled Lyme disease (even though I had been tested and it was negative ) and found I sounded to much like lyme to ignore it. Long story short I found a Lyme specialist and was dx with lyme disease. I have been in treatment now for three months and feel I am 70% better. I am so glad I went ahead and had this testing done and found a doctor who could help me. If you want anymore information feel free to email me.
***@****
Good luck,
Lesley
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