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Muscle contractures
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Muscle contractures

I have had muscle contractures in my hand and feet since I was 12 (I am now 24).  The doctors can not diagnose this.  I have had a muscle biopsy and numerous blood tests.  The muscles in my hands and feet contract and spasm.  It feels very much like a charlie horse.  The only way I can try to "work it out" is to get up and walk it off if it is in my feet, or run my hands under hot water and massage them.  After they are "unlocked" my hands are swollen between the knuckles (right where the muscle is).  I have had a few trips to the e.r. because they were stuck for hours and I have been given a muscle relaxor via injection right into the sight, this helped but I can't go to the e.r. everyday.  I have tried numerous medications to no avail.  I must also note that when I was eight years old I had a skin disorder (skin discoloration which was not raised or scaly in any way, but the hair did grow thicker on these "patches").  I did have a skin biopsy for this and they were unable to diagnose this as well.  I saw numerous specialists and was even sent to a medical convention along with three other children whom the doctors were unable to diagnose.  There were 50 dermatologists from around the world at this convention and they were unable to diagnose me.  I seem to think that this could all be related, the connective tissue disorder and the muscle disorder, but my doctors tell me it is unlikely.  I also have absence seizures for which I was diagnosed around age 14.  This all came about within 5 or 6 years of each other.  Am I crazy to think that it could all be related? Right now I am awaiting the results from another specialist, one who works in NY and specializes in rare muscle disorders.  I have the feeling that he will be dumbfounded also.  Hopefully you will have some insight into my condition.  I would appreciate any feedback you could give me.  Thank you.
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Dear Christine L:

I am not sure I can help.  What have the lab results been during one of your muscle cramping episodes?  More specifically the potassium and calcium, creatine kinase levels?  I am assuming that the EMG of your muscles was normal?  Between episodes, are you perfectly normal as far as muscle strength, range of motion, etc.:  When they did the muscle biopsy, did the electron microscopic analysis reveal any subtle changes in the shape or number of the mitochondria?  

Let me know some of the above and I will get back to you.

Sincerely,

CCF Neuro MD
7 Comments
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Avatar_n_tn
Thank you for such a fast reply.  All of my potassium, calcium, and other levels are fine.  The doctor ran so many tests I really don't even know exactly which ones.  I was tested for MD, Lupus, Lymes and all the other obvious diseases.  I do not have the final results back from the biopsy, the specialist in NY should have something in a week or two.  I did have three EMG's done two which showed nothing and then I have a VERY extensive one done by the head of neurology at Thomas Jeff. Hosp. in Phil. where she made me make a muscle and injected the needle quite far into the muscle and stayed there for about 5 minutes at a time.  I was there for about 2 1/2 hours and when I was done I felt like I just ran a marathon.  She was so intrigued that she called in her interns to stay and watch (I felt like a guinea pig).  She said that it showed that I have scar tissue wrapped around my muscles!!  How could that be.  My regular neuro said that it must have been a substance that looked like scar tissue, but no one knows.  My regular neuro also said that it looks as though my muscles are deteriorating.  I should also tell you that this did get a lot worse after my son was born three years ago.  I now have this in my back and starting in my legs.  I actually fell down the stairs a few times because my ankle will "give out" or cramp.  Remember this is just like a charlie horse so it is not only annoying, it is very painful.  Right now my right hand is cramped because of the whether.  I have taught myself to type with one hand because I refuse to be disabled the rest of my life as I am only 24 and not apparently getting any better.  I really appreciate your input on this.  Thank you.
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Avatar_n_tn
Dear Christine:

Since all your labs were normal during one of your events, I am not sure what the etiology of your disorder is.  I am sorry that I can't really help.  This is one of the limitations of the internet.

CCF Neuro MD
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My mother who is 75yrs old, had an operation for a heart annurism. She still has another one, and actually pulled through the first operation very well.  They decided not to operate on the second one as of yet.  The trouble is ever since the operation, she has been having severe back spasms which go down her leg to the point where she actually falls to the floor and can't move.  Sometimes she has one right after the other then they'll stop for the rest of the day.  Somedays she won't have even one.  The doctors have no clue what this could be and she has had x-rays, bloodtests, and they still don't know why she has this.  She is going to see a back specialist, but can't get in for a month.  I can't stand to see her suffer because she is normally a very active women and this has stopped her in her tracks from any kind of enjoyment in life.  Is there anything you can think of why this is happening to her?  Any information would be a help.  Thank you so much.

                               Sincerely,
                                    Pam
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Avatar_n_tn
Dear Pamela:

I am not sure what is causing the spasms.  I guess the initial thing to consider is whether the spasms are the result of muscle or nerve problems.  If there is no radiation of pain down the legs, sharp acute knife-like pain, then I would vote for muscle spasms. Muscle spasms should not radiate down the leg, for the spasm should just be in one or two muscle groups, so I am puzzled by your description. If there is radiation of the pain down either leg, then may be this is spinal cord.  If there is objective weakness in the lower extremities then there could be a spinal cord problem also.  An operation just of the heart should not cause a spinal cord problem, unless there was prolonged hypotension during the surgery, long clamp time, long time on bypass, etc.  Are there things that make the pain worse or better?  

I am sorry that I am little help.

CCF Neuro MD
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Avatar_n_tn
I got a charlie horse in the right calf on 5-15-00 in the AM and stood on it - it went away. However, later that day, the leg started cramping up in the same area and that has continued for another day.  

I take voltarin and other medication.  What is good to relieve the Charlie horse - cold compress or hot compress?
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Is it possible this person has proximal myotonic myopathy? I was diagnosed with PROMM about 17 months ago and the muscle cramping was definitely the early stages of my disease. I'm currently taking Tegretol to control the cramping. I know that PROMM has only recently be recognized, and alot of cases have been either undiagnosed or misdiagnosed. It's atleast worth checking into.
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