still wondering at significance of a low titre GM1 antibody associated with sensory motor peripheral neuropathy and extreme tiredness, muscle cramping etc.... can anything be done to improve symptoms without a more specific diagnosis???is this how some of the mmn and als begin, or is there enough info on the beginning stages of any of these diseases that seem to be so non specific for testing....just wait and see? the best offer???
Hi,
This is my first time to look in on a site like this. I'm very impressed with all the medical staff that take time to read and answer the email!
I'm having some symptoms that I'm wondering if I should have checked out or if they are even related to each other. I'm a 39 yr old female in good health, I've recently lost 65lbs and still have 30 to go. I have a quite severe case of tenitus (with some hearing loss) for the last 10 yrs. I had a full exam in '89 and was told it would probably go away if I'd lose weight (hasn't helped).
The new problem is night time leg cramps, creeping sensations in lower legs, spasms and tics. I also have tender spots all over my legs that seem to be just under the skin. My husband and I can actually feel little knots or grainy like
areas where it feels tender. The other night I had a charlie horse so bad my big toe stuck up and wouldn't go down for 15 minutes!I'm a fifth grade teacher with 32 students and I don't know if these symptoms are from stress or if I should see a doctor. In case the diet (Atkins) makes you think I might be having a vitamin deficiency, I assure you I take loads of vitamins including calcium, magnesium, potassium and others suggested for cramping.
THANKS SO MUCH EVEN FOR READING THIS!!! Deb
Dear Christine:
I am not sure that I can help you. Afterall, world famous doctors have been stumped. Muscle cramps can be from many things, and likely most have been ruled out in your case. What did the EMG show? Was there any thought to eosinophil disease, or myokymia? Sorry, I can't help.
CCF Neuro MD
I am a 24-year-old who at 8 years old went to a convention at a world renowned hospital where 50 doctors from around the world came to try and make a diagnosis. I had brown spots all over my body. They were not scaly, hard, or raised. They were just discolorations. The hair on these "patches" grew thicker and darker. A few drs thought scleroderma. A few just said they had no idea, it was some type of Connective Tissue Disorder. Then around 12 years old my hands and feet started cramping. They lock in strange positions and this is extremely painful. It feels like a charlie horse but worse. The only thing I can do is try to "unlock" them by forcing the muscle the other way when possible. Then at 15 I was diagnosed with absence seizures (I did have febrile seizures as an infant and was on Phenobarbatol until age 9). At 18 I started getting treated for migraines. All the while no drs were sure what was wrong with my muscles. About 3 years ago I had my son and after he was born my symptoms got a lot worse. I was in agony. I started seeing specialist after specialist. I am being treated by two neurologists. One is about an hour away and treats me for my muscles, the other is around my home and treats me for my seizures and migraines. The muscle specialist recently took a very deep muscle biopsy and was stumped. He had to send it out to another specialist who specializes in rare muscle disorders. I have tried therapy, quanine, and I take Depakote for the seizures. The locking and triggering is getting severe. It is now in my ankles, to the point that my ankles constantly cramp and I have fallen several times, it is in my back and it is starting in my legs. Only since I have had my son has it really began to worsen. Do you have any ideas. I am stumped and so are all my doctors. Obviously I have been tested for everything under the sun (thyroid, fibromyalgia, lupus, lyme's, etc....) I have had 3 EMG's (one was over two hours long - very extensive work-up) and I get MRI's at least once a year if not twice. Please help. Any thoughts would be greatly appreciated.
Dear Cheryl:
I would agree with the vasculitis workup but one other thing to consider is a mitochondrial disease called MELAS (mitochondrial encephalopathy, lactic acidosis, and stroke-like syndrome). It can also present just as you describe.
Sincerely,
CCF Neuro MD
I'am a 53 yr. old female whose MRI showed "white matter disease". I have a history of cramping in the lower extremities, deep fasciulations over all my body, neurogenic bladder, depression, fatigue, and intense "patches of itching in the lower extremities followed by muscle soreness, episodes of L'hermitte's syndrome and increasing number of headaches. The EMG's were negative as well as a spinal tap.The "spots" on the MRI 9 months ago were less than the MRI I had last week.( the radiologist said they were fluctuating in nature) Blood test results for CBC, Sed rate, ANA, B12, are due back in a week. Last month I was hospitalized through the ER with shortness of breath and a dull throbbing pain in the heart that at times felt like it was moving into the arm. My EKG and other blood work and a subsequent treadmill were all normal. Last year I was told it was probable MS-now it's been suggested it might be vasculitis,arteriosclerosis or migraine pattern(?) Yesterday the itching was so intense it was actually painful and muscle soreness in the afflicted foot set in today. There is no rash but many times a patch of petichia or bruising remains. Is all this related to one condition? This has been going on for some time and I need some answers soon because I have too many days of feeling generally unwell lately. Any advice would be very much appreciated. Thanks so much for this service.