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Please any suggestion or thoughts, professional or not please!
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vwick77 posted:
I have had suspected MS for 6 years now with symptoms from numbness in hands, head, finger, toes to brief paralysis in my left leg that caused my knee to buckle and caught myself on a piece of furniture to prevent falling. Pressure behind eyes, and numerous bouts of Trigeminal Neuralgia, eye twitches during trigeminal neuralgia attacks along with shakiness and chills. No MRI has shown lesions as of now. I have been swaying into walls around corners and hitting them hard with my left arm and left shoulder.

Many episodes of described above to mention. In the meantime I have been DX with fibromyalgia, but this doesn't seem to hold with doctors exam below. I have looked over records from a neurologist apt I had in Boston when I lived in the northeast and this is what he found on examination below

Reflexes were 3+ and symmetric in the upper and lower extremities. There were bilateral finger flexors and Hoffman's signs, more prominent on the right. There were 3 beats of left ankle clonus. Increased reflexes in upper and lower extremities.

I moved to Arizona this past July and waiting on insurance to see a doctor but I feel lost and so concerned, any advise would be awesome!

Thanks for your time!
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hackwriter responded:
Dear vwick,

Sorry to hear you're going through this, it's tough to live with such changes and not know what is causing them.

The experiences you describe with doctors are so typical of an MS patient's journey: The symptoms, the clean MRIs, the Fibromyalgia diagnosis, and the waiting. The problem with MS is that it is hard to diagnose, so many other conditions can mimic the symptoms and they have to be ruled out via testing and the passage of time.

I waited six years after my first attack for a diagnosis, and that was WITH a spine MRI that showed two lesions. The diagnostic criteria for MS involve having two or more lesions disseminated in space and time, meaning a doctor wants to see more than one attack and the formation of new lesions over time. And so we have to wait, often for years.

An MRI might not pick up lesions that are small and scattered, and those 1.5T and 3T machines cannot image cortical gray matter lesions. Scans never tell the whole story. Lesions will show up eventually if you have MS, but it is possible that they won't be large enough for a scan to pick up for a long while. You likely got the Fibro dx because of the absence of lesions.

Arizona has a fair amount of MS specialists, I believe the Mayo Clinic has a site in Scottsdale. Try to see an MS specialist for further testing. And don't give up, keep pushing for testing until you are satisfied with the answers.

I hope you will keep us posted on your testing in Arizona.

Kim
 
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vwick77 replied to hackwriter's response:
Thank u Kim!!!

I'm gonna look up the Mayo Clinic in Scottsdale that you suggested! I'm new to the state and I want to find a specialist in MS! The frustration is beyond words which I know many on here can relate too! Just scary not knowing what can happen next or what can completely disable you!

I have many of my past records and I'm getting some more from Boston that I'm taking with me to anyone new.
 
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swampster1952 replied to vwick77's response:
Hello Wick,

After 4 years of frustration in trying to get a dx here in Alaska I made my own appointment with the Mayo Clinic in Scottsdale. After 5 days of exhaustive testing I had my dx. You guessed it, MS.

I would recommend them too.

Dave
 
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vwick77 replied to swampster1952's response:
Dave, I hope u are well and got some validation in your health and the treatment you need to stay healthy!

I have been looking up the clinic and I need to contact them, I don't currently have health insurance so that has caused me stress I will contact them and see what they can do!

Thank you for your input and god I hope I get answers soon, 6 years has been to much!


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