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MS?? So many doctors... So many different symptoms
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starburst29 posted:
Hello everyone,
I'vee been to several doctors and twoo think I dont have ms and an ms specialist thinks i have ms. My first symptoms were bone pain in lower legs and splitting sensations. Then it changed to tingling and numbing that comes and goes. The symptom that bothers me the most is my mouth-lip and nose vibrating and twitching. Does anyone else have the same symptom in the face. It also feels like something is crawling around on my face and mouth..My fingers and toes twitch as well. My brain mri came back with one lesion, however, some docs thinks its ms lesion while others thinks its caused my something else. My body feels like something is detaching.. so very stress full. I've been dealing with a variety of symptoms for a year now..First symtom was chest pain...
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swampster1952 responded:
Hello starburst39,

I can relate to your list of symptoms! They sound exactly like what I first had to deal with before I finally got my dx (diagnosis).

Who ya gonna believe? If some of the docs don't think you have MS then what is their explanation of what is causing your symptoms? I guess I would lean more in believing what the MS specialist is telling rather than the others.

Did you have a MRI done of your spine? If not you should. MS is a degenerative disease of the CNS (central nervous system) which includes your spine along with your optic nerve.

I hope you get a firm dx soon so you can start treating it.

Dave
 
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hackwriter responded:
Dear starburst,

The symptoms you describe are consistent with MS muscle spasms and neuropathic pain. Facial numbness, twitching and pain are common in MS. The chest pain you described could be something we call the "MS hug," spasms of the chest and abdominal muscles.

Your doctors are probably divided on a diagnosis because many other conditions share common symptoms with MS. However, if an MS specialist is convinced it is MS, I would give more weight to that opinion since he/she has likely seen and treated many more MS cases and is more experienced in recognizing MS lesions on MRIs.

You don't have to have a diagnosis to treat your symptoms.
They can be eased by spasticity meds such as baclofen, zanaflex and flexeril. Gabapentin and Lyrica treat neuropathic pain and those creepy-crawly sensations. If you haven't already, talk to your doctor about all your treatment options.

Hope this helps.

Kim
 
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starburst29 replied to hackwriter's response:
Hello Kim,
I cannot take any of those meds. I've tried them already and Im alergic to them. I have a chemical sensitivity. Muscle relaxers causes acid reflex flare ups in me. Gabapentin and Lyrica increased my tingling and numbing symptoms... I have a hiatal hernia so its hard for me to take certain meds because my digestive systom goes haywire. I just came back from the neuro sugeon today. He going to discuss spinal tap with MS specialist and they are also going to serch for other conditions as well as infectons. Yes, Dave I had spinal MRI and it showed no lesions. However, I have really bad neck pains/stiff neck. In addition, a year ago I got bit by sevral ticks and lyme test came back negative. However, I heard that you can still have lyme with a negative test result, not sure how true that is.?? Kim and Dave, how long have you had Ms?
Thanks Kim and Dave
 
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hackwriter replied to starburst29's response:
Here are a few interesting articles about Lyme Disease testing. The common thread running through all three seems to be the possibility of a false negative if you don't have enough antibodies in your system that a test can pick up. So, it's possible that your immune system has been keeping the antibody level low enough to make a negative test result. If you do have Lyme, however, eventually that battle will be lost and future Lyme tests should show positive.

http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5405a6.htm

http://en.allexperts.com/q/Lyme-Disease-2911/2008/9/Lymes-symptoms-general-questions.htm

http://labtestsonline.org/understanding/analytes/lyme/tab/test

I had my first MS flare in 1999, but didn't get the diagnosis until 2005, a year after my second flare.

Sorry to hear that you are sensitive to symptom meds. I also have GERD and a hiatal hernia and I'm lucky to be able to keep it under control with Prilosec most days. I once suffered from chest pain after the evening meal for an entire year with no way to relieve it, and discovered that I was also suffering from gallbladder disease. The chest pain disappeared a couple of months after I had my gallbladder removed. It's been a year now since the pain has gone and I still can't be certain what caused it. I haven't ruled out muscle spasms despite having a malfunctioning gallbladder.

Matching up symptoms with diseases is very hard, lots of gray areas; despite my frustrations with the medical profession, they do have my sympathy. I hope you can get some answers soon, do keep us updated.

Kim


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