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Neurology (Expert Forum)
B12 vs. MS or fibromyalgia
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury
B12 vs. MS or fibromyalgia
by Dee Ann, Nov 24, 1999 12:00AM
I will try to keep this brief. I was a 35 athletic (karate, backpacking, golf, weight lifting, arobics) female until around JUne. My symptoms started way back in 1996.
1. 1996 just didn't have the same stamina (ck low normal)
2. 1997 complained of not sleeping also had a parastesis on my left side from the top of my head to my toes for over 24 hours. My body was split in half by this feeling. CT negative.
3. 1998 real fatigued. working out, but had to sleep now
4. Oct 1998 hips began hurting....real painful to drive. Fatigue continues. Sleep when shouldn't be sleeping.
5. Jan 1999 hip pain from tight IT band. PT fixed it.
Also partial lateral meniscus surgery
6. May 1999 not recovering.muscles to tired lift weights
7. June 1999 hurt low back really bad playing golf
8. July 1999 lots of painless muscle spasms everywhere except abs (this includes face and neck all the way to feet). Also had lots of heat sensations. Later in the month, I began experiencing real pain in my hips and across shoulder blades. PT found lots of tight muscles all over my body. There seemed to be shortening causing patella tendonitis among other things. Their neurological exam was normal. Stretching program did no good. Fatigue unrelenting.
9. Aug 99 I began having tremors (all over)and lots of muscle pain. Couldn't be up for more than 20 minutes at a time. This lasted 2-3 weeks. Had to sit down or fall down. Thyroid, lupus , lyme, ANA, RA etc showed nothing. Neck real tight. Have feeling that I can't swallow. It feels like lymph node pain, but lymph nodes not swollen. Painful muscle spasms.
10. Began taking B comlex and a multivitamin
11. Symptoms began to subside somewhat. Stopped taking B complex. Sleep study normal.
12. Symtoms came back 2-3 weeks later. Began B complex again..symptoms subsided.
13. Went off it for 5 days and had a B12 level. result 324.
14. Took it again consistently. Other symtoms include parasthesis (pins and needles, knives and daggers). Lots of muscle pain and tightness so as to restrict flexibility. Began feeling better...so attempted to swim. After day 3 of swimming, I couldn't go anymore. It is like the muscles wouldn't work. Fatigue appears to be cumulative. The muscle fatigue doesn't feel like fatigue, it is more like they just don't work. Stairs are a real bear when I am like this, although I am not breathing hard.
15. Nov..asked GP for B12 shots. She complied, but wanted me to only take it once a month since my level was normal. Doctors said not to get my hopes up, that there are many muscle things we know nothing about and B12 is a wonderful thing.
16. Nov 2..began taking Shots tiwce a week (against my doctors wishes). Within 2 days, I was dreaming again. Within a week, the parasthesis went away. Within 2 weeks, the pain started diminishing. Now my muscles feel like they are loosening up and I am gaining my flexibility back. Still not exercising, but feel like I can maybe next week. The parasthesis comes sometimes, but seems to be coming from my back which is still weak. It goes away when I move. I have had 7 shots in 3 1/2 weeks.
I guess my question is,, do you believe A low normal B12 can do all this? The literature seems to say yes, but my doctors still say no. They still want me to go through the MRI, EMG etc. I want to take the wait and see attitude. Of course, the right thing to have done, in hindsight, was get a B12 level at the start, but can't go back now. Of course, I am somewhat concerned that the B12 just helped fix a demylinization problem caused by an MS episode. (I have a second cousin with MS). I wouldn't know if I am more clumsy, because I haver always been clumsey. I don't think it is fibromyalgia because my pain has been different. What do you think?
Thanks for your time. Your opinion would be greatly appreciated.
1. 1996 just didn't have the same stamina (ck low normal)
2. 1997 complained of not sleeping also had a parastesis on my left side from the top of my head to my toes for over 24 hours. My body was split in half by this feeling. CT negative.
3. 1998 real fatigued. working out, but had to sleep now
4. Oct 1998 hips began hurting....real painful to drive. Fatigue continues. Sleep when shouldn't be sleeping.
5. Jan 1999 hip pain from tight IT band. PT fixed it.
Also partial lateral meniscus surgery
6. May 1999 not recovering.muscles to tired lift weights
7. June 1999 hurt low back really bad playing golf
8. July 1999 lots of painless muscle spasms everywhere except abs (this includes face and neck all the way to feet). Also had lots of heat sensations. Later in the month, I began experiencing real pain in my hips and across shoulder blades. PT found lots of tight muscles all over my body. There seemed to be shortening causing patella tendonitis among other things. Their neurological exam was normal. Stretching program did no good. Fatigue unrelenting.
9. Aug 99 I began having tremors (all over)and lots of muscle pain. Couldn't be up for more than 20 minutes at a time. This lasted 2-3 weeks. Had to sit down or fall down. Thyroid, lupus , lyme, ANA, RA etc showed nothing. Neck real tight. Have feeling that I can't swallow. It feels like lymph node pain, but lymph nodes not swollen. Painful muscle spasms.
10. Began taking B comlex and a multivitamin
11. Symptoms began to subside somewhat. Stopped taking B complex. Sleep study normal.
12. Symtoms came back 2-3 weeks later. Began B complex again..symptoms subsided.
13. Went off it for 5 days and had a B12 level. result 324.
14. Took it again consistently. Other symtoms include parasthesis (pins and needles, knives and daggers). Lots of muscle pain and tightness so as to restrict flexibility. Began feeling better...so attempted to swim. After day 3 of swimming, I couldn't go anymore. It is like the muscles wouldn't work. Fatigue appears to be cumulative. The muscle fatigue doesn't feel like fatigue, it is more like they just don't work. Stairs are a real bear when I am like this, although I am not breathing hard.
15. Nov..asked GP for B12 shots. She complied, but wanted me to only take it once a month since my level was normal. Doctors said not to get my hopes up, that there are many muscle things we know nothing about and B12 is a wonderful thing.
16. Nov 2..began taking Shots tiwce a week (against my doctors wishes). Within 2 days, I was dreaming again. Within a week, the parasthesis went away. Within 2 weeks, the pain started diminishing. Now my muscles feel like they are loosening up and I am gaining my flexibility back. Still not exercising, but feel like I can maybe next week. The parasthesis comes sometimes, but seems to be coming from my back which is still weak. It goes away when I move. I have had 7 shots in 3 1/2 weeks.
I guess my question is,, do you believe A low normal B12 can do all this? The literature seems to say yes, but my doctors still say no. They still want me to go through the MRI, EMG etc. I want to take the wait and see attitude. Of course, the right thing to have done, in hindsight, was get a B12 level at the start, but can't go back now. Of course, I am somewhat concerned that the B12 just helped fix a demylinization problem caused by an MS episode. (I have a second cousin with MS). I wouldn't know if I am more clumsy, because I haver always been clumsey. I don't think it is fibromyalgia because my pain has been different. What do you think?
Thanks for your time. Your opinion would be greatly appreciated.
Doctor's Answer
by CCF Neuro[P] MD, RPS, Nov 24, 1999 12:00AM
Dear Dee Ann:
You seem to be having a benefit to taking vitamin B12. Most studies have shown that taking the vitamin oral in large doses is comparible to getting IM injection. So, if it is giving you benefit, then unless you enjoy shots then you might switch to oral. Whether a low normal value of B12 can give you symptoms, depends. If you initially had a low level (before assay) then you might just be seeing the added dosage uping the level to low normal now. I don't think taking B12 will hurt you as it is water soluable and just makes the toilet flushing expensive. We do see benefits with B12 in mitochondrial diseases. But you do not sound mitochondrial (but one never knows until the workup is done). Also, taking B12 is cheaper than doctor visits. Yes, we have seen people who respond to low normal B12 levels with symptoms.
CCF Neuro MD
You seem to be having a benefit to taking vitamin B12. Most studies have shown that taking the vitamin oral in large doses is comparible to getting IM injection. So, if it is giving you benefit, then unless you enjoy shots then you might switch to oral. Whether a low normal value of B12 can give you symptoms, depends. If you initially had a low level (before assay) then you might just be seeing the added dosage uping the level to low normal now. I don't think taking B12 will hurt you as it is water soluable and just makes the toilet flushing expensive. We do see benefits with B12 in mitochondrial diseases. But you do not sound mitochondrial (but one never knows until the workup is done). Also, taking B12 is cheaper than doctor visits. Yes, we have seen people who respond to low normal B12 levels with symptoms.
CCF Neuro MD
My son's complaints were much like yours. Vitamins and minerals solved a lot of it for awhile and then he went to pieces. He is in a wheel chair because it is too much work to walk. There are a lot of symptoms involved but we went thru 19 different doctors before we found out what it was and got on the right treatment. That was all because we were told there was no Lyme disease in Oregon and he couldn't have it. He does.
Try reading the information at LymeNet.com and Lymealliance.org The symptoms can look like MS or fibromyalgia or a lot of other things. If you know what you are looking for you may find you were in an area where you might have been bitten. People think it is only in NJ and NY. At this time there is actually an outbreak in Malibu Ca. and 10% of children in one school district in Mo. have had the symptoms. It's worth the time to look into it.
And a neg. ELISA test doesn't mean much- only 35% test positive so don't let that stop you. Good Luck.
No, mitochondrial disease can be expressed at any time in life. We see people from birth to their 60's expressing their mitochondrial disease for the first time in life. The normal neurological exam is an indication that you do not have MS. The length of time that you have had your symptoms, one would expect that you would have expressed deficits by this point. But, one never knows. I think if I were you, I would go ahead and have the MRI of the brain. If it is clear then you most likely do not have MS. If you had central lyme disease you would likely show enhancing lesions on T2 weighted scans. So, with a normal MRI scan you might rule out two diseases with one test. Since you do not have a positive lyme test to begin with, I would think that lyme is not high on the differential of possibilities. In difference to the previous poster, lyme disease outside the areas of where the deer tick lives is not common. But, if your insurance allows it and your concerned, a western blot test would answer the question. One usually know if they have a tic bite. In addition, there is usually a characteristic rash. There are other signs such as joint pain that help in the diagnosis. Furthermore, if you live in the city and never venture into the country, mice infested with the deer tic are pretty much not existent. So, there are many things that would lead one to think lyme versus not.
However, since you have responded to vitamin B12, this may all be mute.
CCF Neuro MD