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hello, i'm hoping that someone can help me make some sense of what's been going on with me for the past five years...

in july of 2008 i was suddenly struck with a tidal wave of unusual symptoms. the first thing i felt was tingling running from my left hip and down my leg. after a few hours my outer leg and ankle were tingling and feeling numb. the same sensations then started in my other leg, and then in my arms and hands. when i put my chin down to my chest, my spine would vibrate. about a day later, i had weakness in my legs and arms, and it was difficult for me to even walk around. i had to take breaks blow drying my hair because i was too weak to hold the dryer up over my head. in the next few days, i then developed muscle twitching in my arms, legs, face, and by then i started to freak out. my wrists were weak, and i had tremors in both hands, especially when i was holding something. my arm and hand movements weren't smooth, and i had almost no fine motor coordination. by now, there were areas on my lower legs that were numb to the touch. these acute symptoms lasted about three weeks and then they gradually subsided. during this three week period, i saw my primary care doctor, a rheumatologist, a neurologist, and a spine doctor. i had a ton of blood work done, MRI of my brain, spine, and the only abnormal finding was an elevated m-protein in my blood (a red flag for multiple myeloma and something i have had monitored every few months since then - and not related to these symptoms). No one could give me any diagnosis or explanation for any of my symptoms. the neurologist and spine doc ruled out MS.

since then i have had these same sensations periodically, but not nearly as severe. the numbness and tingling in my fingers and toes has come back frequently, more than any other symptom. i am having a "flare" of whatever it is that's been going on, and now some of my fingers have such burning pain in them i can't grip things in my hands. i also have pins and needles, or a feeling of "chills" in my arms, face, and scalp, as well as down my legs. something else that happened once about a week ago was that for about 30 seconds, both of my eyes were "vibrating" back and forth rapidly. fatigue has been mainly in the afternoon, and then by later in the evening i feel better.

i'm seeing a new neurologist on tuesday, and i'm hoping that he will look at my records, listen carefully to my medical history, and be able to tell me what's going on. does MS present in this manner? are the symptoms i've had common symptoms of MS? what questions should i be asking the doctor on tuesday? i'm by no means as miserable as i was in 2008, but with these symptoms coming and going over the years, i am highly suspicious of MS. but, i also have a very low vitamin d level, am currently on iron for anemia, and i have a positive ANA and SSA for sjogren's syndrome. i'm 47, and also in the throes of perimenopause. good times!

i apologize for the long post, but i'm very frustrated and really hoping to gain some insight here.

thank you so much, lily
[QUOTE=ruzalily;5179205]hello, i'm hoping that someone can help me make some sense of what's been going on with me for the past five years...

in july of 2008 i was suddenly struck with a tidal wave of unusual symptoms. the first thing i felt was tingling running from my left hip and down my leg. after a few hours my outer leg and ankle were tingling and feeling numb. the same sensations then started in my other leg, and then in my arms and hands. when i put my chin down to my chest, my spine would vibrate. about a day later, i had weakness in my legs and arms, and it was difficult for me to even walk around. i had to take breaks blow drying my hair because i was too weak to hold the dryer up over my head. in the next few days, i then developed muscle twitching in my arms, legs, face, and by then i started to freak out. my wrists were weak, and i had tremors in both hands, especially when i was holding something. my arm and hand movements weren't smooth, and i had almost no fine motor coordination. by now, there were areas on my lower legs that were numb to the touch. these acute symptoms lasted about three weeks and then they gradually subsided. during this three week period, i saw my primary care doctor, a rheumatologist, a neurologist, and a spine doctor. i had a ton of blood work done, MRI of my brain, spine, and the only abnormal finding was an elevated m-protein in my blood (a red flag for multiple myeloma and something i have had monitored every few months since then - and not related to these symptoms). No one could give me any diagnosis or explanation for any of my symptoms. the neurologist and spine doc ruled out MS.

since then i have had these same sensations periodically, but not nearly as severe. the numbness and tingling in my fingers and toes has come back frequently, more than any other symptom. i am having a "flare" of whatever it is that's been going on, and now some of my fingers have such burning pain in them i can't grip things in my hands. i also have pins and needles, or a feeling of "chills" in my arms, face, and scalp, as well as down my legs. something else that happened once about a week ago was that for about 30 seconds, both of my eyes were "vibrating" back and forth rapidly. fatigue has been mainly in the afternoon, and then by later in the evening i feel better.

i'm seeing a new neurologist on tuesday, and i'm hoping that he will look at my records, listen carefully to my medical history, and be able to tell me what's going on. does MS present in this manner? are the symptoms i've had common symptoms of MS? what questions should i be asking the doctor on tuesday? i'm by no means as miserable as i was in 2008, but with these symptoms coming and going over the years, i am highly suspicious of MS. but, i also have a very low vitamin d level, am currently on iron for anemia, and i have a positive ANA and SSA for sjogren's syndrome. i'm 47, and also in the throes of perimenopause. good times!

i apologize for the long post, but i'm very frustrated and really hoping to gain some insight here.

thank you so much, lily[/QUOTE]

lily, my heart goes to you as i understand how difficult your situation is. i m myself going through this. reading experiences of others, unfortunately, Lupus , MS, SS , Fibro , Thyroid disorders can all have similar symptoms.
beside the neurologist, i think you also need seeing a rheumatologist to further investigate for SS or Lupus.





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