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Old 12-10-2004, 10:13 PM   #1
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Sarcoidosis but SEVERE MUSCLE SPASMS

Hello,
I have Sarcoidosis, a disease that causes inflammation in any or many parts of the body, etc.
I have sclerosis in the sacroiliac joint, that could be caused by the Sarcoidosis.
I have severe muscle spasms in my back, in the kidney area, and in the low back. I cannot live without muscle relaxers. I take Zanaflex 2mg every 2 hours. It is not working any longer. If I double it to 4mg, there is no difference. Now I have a rubber-band feeling around my rib cage which is very bothersome. I must use a walker to walk. My low back tightens severely and painful, and it goes down into my thighs. I look like a stiff puppet when trying to walk. My calfs are okay. I waddle when trying to walk that way. I cannot stand for more than 1-2 minutes, then my muscles tighten again, and down I will go if I have nothing to hold me up. I sit on my walker in the kitchen in order to cook, as I have no choice. Shorts little spurts around the house from furniture to furniture to hold onto is okay to walk around, sometimes.
My family Dr first suspected MS. I kind of had that ruled out with MRI. Now my Rheumy suspected MS, but read my MRI report and said NO.
My grandmother on my father's side, has a siister who has MS. I have read that it is not necessarily (see, I cannot think of the word) family related?? If that makes sense??? Yes, I am always forgetting words, they are on the tip of my tongue, and I can't think of them. My husband is VERY familiar with this! Another example is I take 2 words, and mix the first letters of each word. Say I am going to say this: The pen cap, I will say the cen pac.
I just went to type a word just now, and switched the first 2 letters around! These are the symptoms I have found to be somewhat related to MS?? But without lesions showing on the MRI, I would not have it?? My MRI showed several 'prominent Virchow-Robbin spaces'. I do have hemangioma lesions on my spinal cord, per the MRI.
My question is, what are your opinions? Most in particular about the muscle spasms and not being able to walk??
I have been desperate in trying to figure out why I have such terrible muscle spasms in my back, and now the rubber band feeling around my ribs. Any help is soooooo appreciated!!
Thanks!
Laurie
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Old 12-10-2004, 10:20 PM   #2
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LaurieCrochets HB User
Re: Sarcoidosis but SEVERE MUSCLE SPASMS

Hi again!
I forgot a few things! I have heat intolerance as many of my what are Sarcoid related symptoms get worse. I absolutely cannot tolerate heat at all. My head shakes to the right when I lay down to go to sleep. Very dizzy at times, and also sometimes feel like I am on an elevator.
Anyway, that's all for now, for what it is worth???
Laurie
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Old 12-10-2004, 10:45 PM   #3
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Join Date: Sep 2004
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LaurieCrochets HB User
Re: Sarcoidosis but SEVERE MUSCLE SPASMS

See how good my memory is!!! I did forget! Balance!! I walk into the walls ALL the time. It is not from the meds, as I did it before meds as well. From the meds, I am not driving right now. It seems as if I cannot judge 'depth'?? I overshoot or undershoot. I also asked the Dr to write me a script stating I cannot drive right now because of the drowsiness/dizziness from the meds. I was concerned not only for myself, but for others as well. I admit, I have fallen asleep 1 time while driving, but woke back up asap, and have so many 'almosts'.
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