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unexplained muscle cramps

I posted a question a while back about my problem with muscle cramps and I still haven't found an answer, I hope you can help.
The problem started about a year ago, I started to get muscle cramps after any type of movement(some of the cramps are extremly painful). I would get cramps in just about any muscle in by body from the neck down but most of the time they were in my legs, arms and torso area. It doesn't take much to cause a cramp sometimes just walking could bring one on. I have seen two neurologists, a rheumatologist and a muscle specialist. I have had all the neurological tests including an emg, mri, blood tests, x-rays and even a muscle biopsy (checked for metabolic disorders)all of which were negative. My neurologist has no idea what causes the cramps and we have tried several different medications starting with neurontin which didn't work, then we tried elavil which also didn't work, I am now taking zanaflex which does provide some relief from the cramps. I was wondering if you had any ideas what could be causing the cramps, I have no other symptoms except mild fatigue(which comes after the cramps).
The problem is driving me crazy because no one seems to know what is causing the cramps and I have basically been told to live with it. I would appreciate any insight you may have about my condition.
Thanks
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Avatar universal

Get Quinine.
I get extremely painful muscle cramps in my, feet, legs, and hands.  Get a prescription for it from your doctor.  They don't know why it works, but it does.
Helpful - 0
Avatar universal
Did you have your pottasium level checked? low pottasium levels may cause cramps.
Helpful - 0
Avatar universal
Any update on what it may be that you have?

Have they tested you for rare disorders? Is your fatigue actually weakness do you think? When they did the EMG, did they also do a Single Fiber EMG? Have you been tested for Myesthenia Gravis (which has a major symptom of weakness to the major voluntary muscles)?
Helpful - 0
Avatar universal
THANK YOU FOR YOUR COMMENT.  YOU ARE RIGHT ON THE MARK WITH THIS
ONE.  AFTER RESEARCHING ALL THAT I COULD THINK OF I FOUND THAT
HYPOCALCEMIA AND HYPOMAGNISIA CAN PRODUCE THESE SYMPTOMS CHARITERIZED BY MANIFESTATIONS CALLED TETANY.  MY MOTHER HAD
CALCIUM AND MAGNESIUM LEVELS DONE AND THEY ARE BOTH EXTREMELY
LOW.  I HAVE STARTED HER ON CALCIUM AND MAGN SUPPLEMENTS AND WILL
PRAY THAT SHE DOES NOT HAVE ANOTHER EPISODE.

THANKS AGAIN FOR CONFIRMING WHAT I THINK IT IS.


HAPPY HOLIDAYS AND PEACE TO YOU.
Helpful - 0
Avatar universal
Hi,

yeah, i had those huge cramps (even in the mounth) coming and going for over 4 years now (with myoclonus for 8 years), each time with bigger "attacks" leaving me exhausted after flu-like symptoms.
Nobody could find a cause for that, i had complete blood test, EMG etc. everything was normal.
Usually calcium and magnesium could help a bit.

Hope this helps. Pierre.
Helpful - 0
Avatar universal
my mother has suffered from muscle spasms for several years.
hers usually are in the rib area but do travel to other parts
of the body.  sometimes just laughing can start them happening.
they are very painful for her and come and go without any
warning. two years ago i told her to ask her doctor for a
PRESCRIPTION OF QUININE SULFATE. this is usually given for
leg cramps at night.  it has helped her alot and now she only
has them once in awhile and not as severe.  maybe this can help
someone out there that is having this problem. i hope so.
happy holidays to all.
Helpful - 0
Avatar universal
I have been experiencing similar pain for several years now.  After numerous surgeries on both my right and left leg, tests confirm that no nerve damage is prevalent.  Is this symptom one of heriditary descent and what treatment methods are available after immunity to certain prescribed medications?
Helpful - 0
Avatar universal
Your posting sounds just like several I've posted, right down to the tests you've had and the fact that Zanaflex has been helpful.
I've had spasms for 4 years, they begin in middle back, radiate to arms, chest, shoulders, neck and jaw, lasting 15 to 30 minutes; 10 to 12 episodes per day/night.
Went to Cleveland Clinic last Dec., was prescribed Zanaflex with no diagnosis given.  Have taken Neurontin and various pain meds with no relief.  I now take Zanaflex every day 4 mg 4 times a day. But - it is losing it's effectiveness over time... I dread the day when it no longer does the job at all.
This is life-altering pain,can't go anywhere, nor do much either.  I hope you find relief.   Pat
Helpful - 0
Avatar universal
Sorry to hear about your symptoms.  There is a rare group of disorders that present with constant, progressive cramping.  The one that may fit with your particular symptoms is an autoimmune disease called "stiff-man syndrome."  This usually presents in middle aged patients (equal in men and women) and is characterized by stiffness and spasms of the arm/leg and trunk muscles.  EMG is normal as are many of the tests.  It is associated with diabetes and thyroid disease but these are not necessary for the diagnosis.  A lab test can help establish the diagnosis to look for the antibody. Of course, the clinical exam and history are also important.  The treatment is valium, but klonopin and baclofen can also help.  Talk to your docs about this possibility as they have been able to exam you formally.  

And finally, the routine and sendout tests such as calcium, CK enzymes, aldolase, urinary studies and mitochondrial testing should have been done to rule out other more common diseases.
Best of luck.
Helpful - 0

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