Hello!

I am a 22 year old female, and for the past year I have been suffering from a strange series of muscular problems. I have scene so many doctors and no one seems to be able to find anything wrong with me! I am at wits end, and so tired of fighting to find an answer.

It all started in the middle of the night last march. I woke up with a SEVERE charlie horse cramp in my right calf muscle. It lasted 15 mins and returned again 30 mins later. The next morning my leg was black and blue from my muscle tearing during the cramp. I was alright for a few days, but then i began having a terrible shooting pain any time i placed presure on the outer half of the pad of my right foot.

The pain lasted several days and then went away as mysteriously as it came on, however left behind some bizaare symptoms. I was experiencing twitches and spasms in my right calf all the time. No matter where I was or what i was doing there was always a small twitch in the place where i had the original cramp.

Within a month the ailment had progressed to include muscle twitches and cramps up my entire right side of the body. My muscles would seize into a charlie horse style cramp from the slightest strain. I would yawn and my neck would seize up, or I would reach for something and my arm would seize. I'd stand on tip toes and my whole leg would seize up. It eventually got to the point where I could trigger a muscle cramp just by moving my leg in one direction or the other. I started seeing a doctor, and then after nothing came up in my blood work i was sent to a neurologist. I received an EMG and NCS which yeilded no results.

Over the next 6 months I saw several neurologists, went through multiple MRI's and Angiograms. I was placed on every muscle relaxant they could think of, none of which helped the situation even alittle. By the end of the 6 months The symptoms had progressed fully through the right side of my body. At this point it was beginning to take a major toll on my life. I was missing a ton of work due to doctors appointments, and inability to sleep through the pain at night.

I went to see a high ranking specialist at a medical college in the area and was told my best bet would be to inject botox into my leg muscles to effectively paralize the muscles to prevent cramps. At this point my husband and I realized that we werent going to receive the help i needed from the doctors I was currently seeing, so we moved back to the west coast near my hometown, where we felt for lack of care that I would be a bit more comfortable while we battled the strange illness.

We have been out here for almost 6 months now and althought I have alot more faith in my new neurologist, I am still left without a diagnosis or cure. I am so tired... and so emotionally drained I dont know where to turn to now. My symptoms have grown to include receding eyesite, strange hair growth, incontinence, difficulty swallowing, and fatigue. My leg muscles go into states where they twitch and spasm for long periods of time, making it look like there is water boiling rapidly under my skin. Its alarming and painful. Please.... if you have any insight into what could be ailing me please please please let me know. I am so despirate for answers.

thanks,
queenlian

Have you had a work up for neuromuscular disorders such as mitochondrial or metabolic myopathies? I recently went to Cleveland Clinic and saw an expert there and am awaiting some results.

I don't have exactly the same symptoms, but I struggle with fatigue, muscle spasms, muscle tightness, etc. when exercising. It's been a 10+ year battle.

It involves a muscle biopsy to Dx these disorders.

I may be way off, but it's just a thought.

Chris

Not that I know of. I've never had a muscle biopsy taken. I did have an EMG and NCS done. It was extremely painful and they didn't find anything. I'm in a waiting list to see an endocrinologist in the area to see if he can shed any light onto the situation.

To be honest I'm getting pretty despirate for answers. I've been out of work for 6 months because I'm in so much pain that I cant work. Its been getting worse. This is probably the worst week i've had in awhile. I've also begun noticing alot of pain in my right hip on days when my muscles are bad. Its like having sand paper in my joint and it keeps me up all night.

After trying over 15 different muscle relaxants with no improvement I've given up trying them. My doctors have prescribed me sleep aids to help me at least sleep through the pain. I am losing faith in doctors in general. I'm so worn out.

Hello queenlian , I am posting becasue , my wife , who is also 22 years old is having the exact same thing you have. She's only had it for around a month or so , but it's progressing from her left calf to her right. I was wondering if you've found outwhat you have. One thing that sounndus similar , is Lou Gehrigs Disease (ALS) , but I'm praying thats not it. I was wondering if your doctors have discussed ALS with you , or if you've had any tests for it , or if the doctors have ruled it out as a possible diagnose. This is very distressing , and I'm really praying it's not ALS , as ALS is a fatal disease with no cure. It's very strange how her problems started exactly like yours , one night she had a horrible cramp , that lalsted around 5 minutes which she actually passed out from , and from there she started getting worst , now having dificulty walking , and getting the twitching/spams more and more frequent. If I find out anything more on what this could be I will be sure to post here. Btw , did you try the chiropractor like that guy in the other board sujjested ? I'm going to look for a way to contact him to see if his symptoms were exactly the same as yours and my wife's or just similar , as if they are the same then maybe try finding that doctor who cured him.

Btw queenlian , one thing we found helps her a lot with her calf cramps is theragesic , we've been using it daily since the problem started and she hasnt had a cramp since , however , she still has the twitchy calfs ,and if we dont use theragesic at night or when she feels them trembling she will get a cramp. My biggest problem with this is that I''ve heard too much theragesic or bengay or any of those can be toxic , so we are looking for an alternative to that as well. Hope it helps some.

My husband was told in Dec, 06 that he has ALS and told that there wasen't any reason to get a second opinion.
After several rounds of fevers of 105 and the fact that he is ALWAYS in extreme pain and the fact that ALS does not have fevers or the pain,we got a 2nd opinion.
This new doctor found in my husband's blood the mycotoxin trichothecene. They both present the same way and you WOULD have the pain and fevers with this, as one doctor put it, "toxic injury"
The only way to remove the toxin is with a procdure called plasmapheresis.
After the first treatement he REGAINED use of his legs, after the third he was able to stand up and take afew halting steps. At the fifth he was able to walk a little more and his pain decreased.
Here is where it all went crazy.
The doctor who said he has ALS will not back down. He refuses to believe what he saw with his own eyes and he did his best to try to convince us that this kind of thingshappens all the time with people with ALS.
My husband can't walk anymore, couldn't walk before the
plasmapheresis, but was ABLE to walk during the treatments.
No one goes from having destroyed nerves to walking for no apperent reason. But that IS what would have happened if the toxin was what was causing the symptoms.
As another doctor put it, "he has a neuropathy that was previously clinically responsive to plasmapheresis."
ALS does not respond to anything. But the toxin does.

quote:

Originally posted by queenlian:
Not that I know of. I've never had a muscle biopsy taken. I did have an EMG and NCS done. It was extremely painful and they didn't find anything. I'm in a waiting list to see an endocrinologist in the area to see if he can shed any light onto the situation.

To be honest I'm getting pretty despirate for answers. I've been out of work for 6 months because I'm in so much pain that I cant work. Its been getting worse. This is probably the worst week i've had in awhile. I've also begun noticing alot of pain in my right hip on days when my muscles are bad. Its like having sand paper in my joint and it keeps me up all night.

After trying over 15 different muscle relaxants with no improvement I've given up trying them. My doctors have prescribed me sleep aids to help me at least sleep through the pain. I am losing faith in doctors in general. I'm so worn out.

My husband was told in Dec, 06 that he has ALS and told that there wasen't any reason to get a second opinion.
After several rounds of fevers of 105 and the fact that he is ALWAYS in extreme pain and the fact that ALS does not have fevers or the pain,we got a 2nd opinion.
This new doctor found in my husband's blood the mycotoxin trichothecene. They both present the same way and you WOULD have the pain and fevers with this, as one doctor put it, "toxic injury"
The only way to remove the toxin is with a procdure called plasmapheresis.
After the first treatement he REGAINED use of his legs, after the third he was able to stand up and take afew halting steps. At the fifth he was able to walk a little more and his pain decreased.
Here is where it all went crazy.
The doctor who said he has ALS will not back down. He refuses to believe what he saw with his own eyes and he did his best to try to convince us that this kind of thingshappens all the time with people with ALS.
My husband can't walk anymore, couldn't walk before the
plasmapheresis, but was ABLE to walk during the treatments.
No one goes from having destroyed nerves to walking for no apperent reason. But that IS what would have happened if the toxin was what was causing the symptoms.
As another doctor put it, "he has a neuropathy that was previously clinically responsive to plasmapheresis."
ALS does not respond to anything. But the toxin does.

I REALLY SYMPATHIZE WITH YOUR PROBLEMS.I HAVE A MUSCLE DISEASE CALLED POLYMYOSITIS. WITH IT ALONG COMES CRAMPING AND SPASMS ALSO. I JUST FOUND OUT FROM A THERAPIST WHO SPECIALIZES IN MYOFASCIAL RELEASES IN THE BODY THAT MY MYOFASCIAL TISSUE IS INFLAMMED ALL THROUGHOUT AND THAT IS PARTIALLY THE CAUSE OF THE PROBLEM. DOCTORS POOH-POOH IDEAS PATIENS HAVE BUT THANK GOD I ASKED TO HAVE THERAPY BECAUSE THIS TREATMENT OF MYOFASCIAL RELEASE HAS HELPED ME. GOOD LUCK TO YOU.

do a medline plus search on Mcardles disease. Also get your iron and feriton level drawn not just iron but both. Also do a Muscle Dystrophy search under medline and see if any of those fit your syptoms.

Have you had any bloodwork?

About 3 years ago I started with severe cramping/spasm that goes from the bottom of my feet to my eyes. My CPK is elevated running from the 400's to the 700range. My local neurologist who performed my emg thought it may be polymyositis. The specialist in Boston was not sure. A muscle byopsi was inconclusive. One possible triggering effect in my mind was Crestor. I had been on a couple of statin drugs for cholesterol and had to stop them because of foot cramps. After stopping he cramps had always gone away. With the Crestor the cramps spread and never went away.

My life now is a living hell as I can't sleep, can't write, holding a phone to my ear is painful, heck just typing this is killing me and I have 2 percs and a muscle relaxer in me now.

If anyone has any ideas please let me know. All my doctor seems to be able to do is give me drugs to manage the pain.