Posted by Chad on April 22, 1999 at 09:13:52
I am a thrity year old male for the last three years my cpk's have been on the rise. It started out in the range of 900-1200 and with it a have muscle cramps and a low grade fever and migrans on top of all that.
ok now to date my cpk levels are around 2000-2200 had it higher on occasions had many blood test ruled out just about everything and muscal biopsy and the only thing i have come back with is Maligant Hyperthermia Syndrome.
So I'm asking if you have heard of Maligant Hyperthermia Awake Syndrom that seems the way my doctor is taking it at this point in time.
The medications that i am taking is Dantram at 75 mg,,
plese help with any way you can and if it is possible i would like to talk with others with long term elevated cpks...
Chad sorry so breif at this time.
Posted by CCF Neuro[P] MD, RPS on April 22, 1999 at 10:57:28
Sorry to hear about your problem. How did the diagnosis of malignant hyperthermia come about? What did the EMG show? Usually we only we high CPK levels when the muscle is abnormal. Since all your tests have come back normal and I don't have the physical exam to note, what I am thinking is the possibility of a metabolic disorder, a mitochondrial problem. The usual tests would not pick up this problem. This disorders can be found in the context of a normal muscle biopsy. Ask your physician to consider this entity, as it is associated with malignant hyperthermia, migraine, and muscle cramps. The second suggestion is a calcium channelopathy. This disorder has been associated with a type of malignant hyperthermia and migraine. There is a genetic test for this entity, but it is only done in research labs. I am not sure which research labs would run this test for you.
CCF Neuro[P] MD
Posted by Chad on April 22, 1999 at 12:42:10
The MHS was set off during surgery in 84, and my EMG was done 2 years ago and all i remember they said there was slight abnormality with it. I don't have seizures so not to sure if that changes what you might think it could be. The symptoms are kinda like having the flu all the time, aching and a low fever 99.4 to 100.5 sometimes a little higher always tired and no energy and sometimes go days without sleep from the symptoms, but i have notice with the Dantram if i quit taking it for a few days then i start having chest pains, which showed on an EKG as abnormal. During all of this we have ruled out auto-immune.
I like to say thanks for the help.
Posted by CCF Neuro[P] MD, RPS on April 22, 1999 at 16:45:07
The EMG is for muscle not seizure activity. Neither of the problems I mentioned have to include seizure activity. Both can be seen with what your describing without seizure activity.
CCF Neuro[P] MD
Posted by jennifer on April 27, 1999 at 18:14:54
ITS REALLY COOL TO FIND OUT THIS ON THE WEB. THANKS. A WEEK AND A HALF I WENT TO THE ER BECAUSE OF FATIGUE AND MUSCLE PAIN. I THOUGHT I HAD ARTRITIS. THEY TESTED MY BLOOD AND MY CPK WAS 16,000.00. MY DOCTORS ARE CALLING WHAT I HAVE POLY-MYO-CITIS. THEY SAID MY BODY WAS ATTACKING MY MUSCLES. MY IMMEDIATE TREATMENT WAS SOLUMEDROL THROUGH AN IV AND LACEX TO FLUSH MY KIDNEYS. EARLIER IN THE YEAR I HAD THE FLU. THE DOCTORS SAY THAT THIS COULD BE A REMNANT OF THE FLU. I WAS RELEASED FROM THE HOSPITAL WITH CPK AT 9,000.00. MY TREATMENT IS 600MG OF PREDNISONE A DAY. ITS BEEN FIVE DAYS AND I AM GETTING STRONGER BUT MY STRENGTH IS ABOUT HALF OF WHAT IT WAS. A NEUROLOGIST ATTEMPTED AN EMG BUT IT WAS CAUSING ME GREAT PAIN SO HE STOPPED. A MUSCLE BIOPSY IS NOT RULED OUT YET. THE DOCTORS SAY THAT IF MY BODY IS RESPONDING WELL TO TREATMENT, THOSE TESTS ARE NOT NECESSARY. I AM A YOUNG WOMAN, 21,WAS FAIRLY ACTIVE AND NOW MY LIFE IS ON HOLD UNTIL I GET BETTER. I KNOW THAT THEY WERE GOING TO TEST FOR LUPUS AND WILL HOPEFULLY GET THE RESULTS SOON. IF YOU HAVE AND INFO ON THIS SUBJECT PLEASE SEND MY WAY. THANKS
Posted by CCF Neuro[P] MD, RPS on April 28, 1999 at 12:32:01
Sorry to hear about your myositis. Your physicians are correct, this is an autoimmune disorder. Usually it follows a viral illness. For unknown reasons, your body makes antibodies against the virus (a normal response) and some of these antibodies recognize your muscle and start attacking your muscle. As your muscle breaks down, you see increasing CK levels (muscle enzymes that are released as the muscle is broken down) and clinical symptoms of fatigue and muscle weakness. The usual mode of treatment is steriods. We usually treat until the clinical symptoms have resolved. This may be weeks to months of treatment. The steriods are thought to block the immune response (the production of antibodies that are attacking your muscle).
Although lupus can give you fatigue and muscle weakness, one does not usually see the profound weakness that myositis elicits. I would bet that you do not have lupus. I hope that your illness resolves soon.
CCF Neuro[P] MD
Posted by Jody PA-C on May 07, 1999 at 01:30:29
Dear CCF Neuro[P] MD...Can you comment about Amantadine for this kind of thing?
Posted by CCF Neuro[P] MD, RPS on May 07, 1999 at 10:48:53
I am not sure of your question. Sorry but I am very simple minded. Amantadine is used as an antiviral agent for a specific virus, parainfluenza A (I am not completely sure on this). We use it in patients who have been recently diagnosed, within 48 hours and it seems to lessen the symptoms of the viral infection. It is also a weak NMDA receptor agoinst and has been used in Parkinson's disease for it also has some dopamine effects. The NMDA effects are seen in it's use in MS patients to help with their fatigue issues. I hope I covered what you were asking.
CCF Neuro[P] MD
Posted by Jody, PA-C for CCF Neuro[P]MD on May 08, 1999 at 02:26:14
Dear CCF Neuro[P]MD,
I have seen an unfortunate RN on BIG QD Nefazodone! Has the big occupational hazard...low back strain. It is muscular without radiculopathy and point-tender. On that much 5-HT2 receptor blockade though, I wondered how to help spasms without narcs so she could keep on working as desired. I thought this would help, had samples, & got good response. I pushed the ice pack stuff. But it really helped tiredness, fatigue and soreness in some of my elderly parkinsonians. Question...what are the other NMDAs? I've heard of them being used in "neuro-protective coctails" meant to preserve ischemic penumbra with strokes? I always try to keep 'em O2-nated & with enough IVFs (no D5 though) & am interested in this penumbra preservation scheme... v/r ... Jody
Posted by CHAD on May 19, 1999 at 18:05:32
OK,,,,just one little question. Can Pheochromocytoma cause the CPK level to increase to the 2000 mark over a three years.
Posted by CCF Neuro[P] MD, RPS on May 20, 1999 at 17:24:03
An interesting question. It would depend on the time course of tumor expression. There is a theoretical possibility that an elevated CPK could occur in the early part of the disorder as there is such an out pouring of neurotransmitters, but one would not see high levels of CK. And certainly, one would not see prolonged high increases in CK without other signs such as hypertenision, tachycardia etc.
CCF Neuro[P] MD
Posted by for Mike with sick child on May 25, 1999 at 17:18:04
I found this article submitted on MGH, and feel really bad for this gentleman and his child. Could you possibly give some ideas on what to do.
This article submitted by Michael Browning on 5/18/99.
Email Address: ***@****
My 7 year old son was very athletic until about a month ago. Following a bilateral ear infection, he began having trouble walking. He would cry getting from my car to the door. He was initially diagnosed by an orthopedic physician with "transient synovitis" and put on advil regularly to help with the pain. After 3 days of being on Advil, the pain was still unbearable. I took
him to the hospital ER. The doctor admitted him and a consulting physician came by to see him. The doctor is a rheumatologist. He said Ryan was hypermobile and had a variant of Ehlers-Danlos (even though there is no family history and he does not have skin elasticity). His ASO was positive (200) and he ordered an ECHO and Bone Scan. I am a nuclear medicine technologist and I did the bone scan on him. We discovered nothing on the bone scan and the ECHO was normal. I had the techs do an MRI to look for joint effusion, etc. NO LUCK. Today, I got back his blood work. His LDH is 906 and his CPK is 6732 (very high) which would tend to indicate muscle damage or diseaze. He is still in pain and doesn't seem to be getting any better. Also of note, he has played soccer for 3 years and has always been the fastest player on the team until this happened. Please help if
you can. Thank you.
Posted by CCF Neuro[P] MD, RPS on May 27, 1999 at 17:59:21
Dear Mr. Browning:
I am really sorry to hear about your son. Without examining your son and seeing the work-up thus far, it is difficult to make a diagnosis over the internet. What comes to mind are two entities, a myositis and a mitochondrial disorder. The acute nature (how fast things started) would not necessarily fit a myositis but the muscle weakness, and pain would. Also the high CPK and muscke enzyme LDH (I am assuming that the LDH isoenzyme is of muscle) would be a myositis. What was the sedimentation rate? Are they thinking of doing a muscle biopsy? An EMG (before the muscle biopsy) might give a good indication about the muscle. Was the crying from muscle cramping or muscle pain?
A mitochondrial disorder might give the same effect of increased CPK, cramping, muscle weakness, coming on with an illness etc. There would also be some biochemical abnormalities, such as high lactate, pyruvate, ammonia.
Is your son getting weaker? Does he have a rash? (especially on his eyelids). I would see a good pediatric neurologist.
CCF Neuro[P] MD
Posted by angela on May 28, 1999 at 20:53:22
I know this is really not on the subject, but I have been a little worried about what happened to me last Weekend. On Friday I had severe burning in the right eye and pain, that evening I had severe itching in the lower abdominal/pelvic area, saturday the eye pain was gone, but I had numbness in the pelvic area as well as part of the inner thigh, and frontal thigh going outwards and upwards. Sunday, I was just walking to the car from the house, the right side of my neck started hurting. By the time I got home, it was killing me and hard to move. In the process of sitting down, I don't even know from what angle, a sharp pain went from my neck down my back and then through my right leg and foot. My legs felt slightly weak after that, and the next day my neck was sore, and the front part of my thigh muscles were sore like I had done major excercises and I was tired. Do you know what could this be? Should I be concerned?
Posted by CCF Neuro[P] MD, RPS on May 29, 1999 at 09:47:25
Sorry to hear about your problem. It is difficult to say what happened to you based on what you posted. That is a real disadvantage with the internet. I would suggest giving things the tincture of time. The rapid way inwhich things happens suggests that your body might have been reacting to something, sort of like an allergic reaction. If things do not settle back to normal a week or so, I would suggest seeing your physician. Sorry, not to have a better answer.
CCF Neuro[P] MD
Posted by CHAD on June 08, 1999 at 19:42:04
Sorry for the time in between postings I had the Catecholamines test it was slighlty elevated total 822 sitting then went in for a CT scan it came back negitive but with fatty depossites on my liver and not sure if i said anything about the liver yet but it is ast 119 and alt 234. And now waiting to see an Endocrinologist.. and i do have lymp nodes in the neck swollen so any info you can come up with i really appreciate and if you need any info to plese ask and i'll see what i can come up with...Thanks
Posted by CCF Neuro[P] MD, RPS on June 11, 1999 at 13:00:35
Although your liver enzymes are slightly elevated, the level that you have really doesn't fit a chronic liver disease unless the fatty conversion of your liver is very pronounced, which it doesn't sound like it is. The level of catecholamines being slightly elevated suggests an endocrine problem but not a pheo. The CT was looking for a aberrant looking adrenal gland or small tumor, which is good to know that you don't have either. There is a rather obscure and rare entity called "stiff man's syndrome". This is where there is continuous muscle movement, cramps and when stimulated the muscles have an aggrevated response. It is treated with valium. Although not diagnostic, an increase in anti-GAD antibody is seen in 60-70% of patients. Just a thought. Let us know how the endocrinologist has to say.
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