This Is MS Multiple Sclerosis Community: Knowledge & Support

I was diagnosed in early 2009, shortly afterward I began having intense pain deep in my muscles. It's hard to describe, like a dull ache that would go away if I could stretch far enough, but I never can. It's mainly in my calves and arms with a focus on my left shoulder. I've recently started having back pain too. I exercise frequently and bike 10-30 miles a day as I have been doing for years. The biking seems to offer some relief, but it is only temporary. The other thing that helps is going to the Russian Banya and sitting in the 210 degree room. I know I'm supposed to avoid heat, but it seems to help. I've tried nearly everything, baclofen, cymbalta, lyrica, neurontin, amyltryptlene, soma, and a host of other medications that I can't remember but didn't work. I'm not currently taking anything for my MS, I was on rebif for a year, but stopped it because it made me feel like hell. I'm currently taking suboxone for the pain, which works, but I fall asleep whenever I have any down time, mostly inappropriate times. This indicates to me that an opiate will work for the pain though.

I'm only 22 and I have concerns about prospects for the future with this pain. I don't want to be dependent on narcotics for the rest of my life. Because I'm young and have a beard and tattoos, most doctors don't believe I'm in pain and blow me off. The pain management clinic told me to double the amount of motrin I was taking and the notes said the doc didn't believe I was in pain. After a year of searching for relief, I was eventually forced to the street, where I was able to get some pain relief, I have stopped doing so, but it has only complicated my relationship with the doctors. I don't want to have to go to the street, but sometimes the pain is so bad I can't get out of bed. I feel like I've been forced to that option and I don't know what else to do.

I recently got a whole host of blood work done and everything came back normal. I had been having high unexplained fevers and spent five days in the hospital where they refused to do a cervical spine MRI on me. I was released, but they were not able to determine the source of my fevers. My aunt said that she gets fevers with her exasserbations. I've been experiencing a lot more fatigue than normal lately and more pain. I'm seeing a new MS doctor next week, but it's unlikely to bring any relief from the first visit.

I can't keep going on like this. I get little sleep due to the pain, and every morning I wake in terrible pain. I'm otherwise very healthy, I eat well, exercise, and other parts of my life are stable.

read this:
http://triathlon.competitor.com/2010/11 ... etes_16344

they're talking about glutamine, magnesium, zinc, (and carbs).

glutamine conversion to glutamate is a problem seen in ms patients.

magnesium and zinc are low in ms patients.

magnesium has a lot to do with muscle relaxation. you can get a blood test, normal range is 0.70-1.10 so you'll come back 'normal' but you actually want to be at least 0.90 mmol/L. boost high magnesium foods such as those listed at www.whfoods.com.

the other nutrient i was going to mention for pain and which is significant for ms patients is vitamin d3. again if you get tested the docs will tell you you're 'normal' if your level is at least in the 70s (in nmol/L). protection from diseases with immune involvement has a cut-off more like 150 nmol/L. i've seen 100, 125, 130, and 150 suggested as the minimum for protection against ms and various cancers for example. you don't want your level to go above 250 nmol/L that's when it gets into the toxic range.

here's the link to the athlete's nutrition bit above. like athletes, ms patients tend to have lower zinc. again, low within the 'normal' range. that range is usually 10-20 umol/L. healthy controls have levels more like 18 umol/L. ms patients average in the low teens. when you have optimal zinc status your liver can process vitamin d3 from sunlight or supplements far more efficiently. when i went from zinc deficient to zinc replete, my dose-response to vitamin d3 supplements tripled.

and going back to the glutamine and glutamate thing, there are links to zinc there too:
Protective Action of Zinc Against Glutamate Neurotoxicity...
http://www.iovs.org/content/36/10/2048.full.pdf

can you elaborate on the tests you've had done? if you have not had tests for vitamin d3, magnesium, and zinc, these are some of the key ones to watch for ms patients and now you have the targets, within the 'normal' range, that match healthy controls, not ms patients.

hope that helps!

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

ps

http://www.msrc.co.uk/index.cfm/fuseact ... pageid/653
"Zinc is also important in the production of prostaglandins (PGs). PGs are vital to numerous body functions including, for example: the function of the immune system; the expression and control of inflammation; skin and wound healing; function of the heart and cardiovascular system; absorption of various minerals; body temperature control and the important functions of fertility, conception, and delivery of the infant."

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Jimmylegs,

Can you elaborate on the glutamine - glutamate connection, or direct us to the information.

I'm confused about that.

Thanks.

are you sure you have ms? with fevers you could have lots of other things and i am very sympathetic to having doctors blow you off because they make a judgment about you based on your appearance. no one ever takes me seriously either. i'm too quiet. anyway, that pain sounds all too familiar, and seizure meds, spasticity meds, and very deep hard pressure can help, but really it just aches. cold makes it much worse. heat really helps. have yoou been tested for lyme, etc.?

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</div><div>Every moment of light and dark is a miracle. -- Walt Whitman</div><div>

Thanks for the suggestions. I'm not really sure what tests were done, the ID specialist just quickly went through everything with me. They did do a Lyme test in the latest bout though. The preliminary results came back positive, but returned negative when sent to an outside lab for further analysis. I've also taken various benzos with no effect.

no probs.

OM, you might like to find out if they ran magnesium and zinc tests. i doubt it. something to think about asking for.

@kate: more on glutamate

http://www.neurotransporter.org/glutamate.html

more on glutamic acid

http://en.wikipedia.org/wiki/Glutamic_acid

hth!

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

I don't know how long ago you were diagnosed, but talk to your doctor about this and keep talking to them about it till you find something that works. My doctor and I went through 3-4 things before we found something that worked for me (other than teh herb) But when we did (in my case neurontin) it was well worth the process of getting there.

The Magnesium thing that gets passed around online does seem to help some people, it didn't help me in any meaningful way, but hey that's the fun of MS, you can never be sure what's going to work or not because all of our MSes are beautiful showflakes of uniqueness, isn't it great?

Please try LDN. For me, it really helped

How low does LDN get? I'm coincidentally getting .5mg a day from the additives from the suboxone.

bender what was your particular problem? if pain, what specific kind of pain and where?

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

I may not be the same as you Bender. But I had back pain which got so bad none of the medications my GP would give would touch it. I was really desperate till I tried an IR heat lamp. I mess about with old cars and I have a 3kw infra-red lamp for drying paint. I brought it into the bedroom and sat in front of it for twenty minute a day twice a day. The effect was amazing. After twenty minutes there was no pain. The pain slowly crept back during the day but was nothing like as bad. After a matter of weeks I found I could manage with only 10 minutes twice a day and eventually stopped altogether. I only do it now very occasionally when I think I need it.

It might help. Infra-red penetrates and heats your muscles while improving circulation too. If you do try it I would recommend getting a powerful lamp. There are many small 250 watt lamps around which are not much good for big areas. You want a lamp you can warm your whole body with at about 20-30 inches distance. The effect is a bit like having a sauna but it is more comfortable without the steam.

I also think that near infra-red (usually gold coloured) lamps are better for you than far infra-red (usually black or red.) But the far infra-red lamps are more common. There is a fair amount of information about it on the web. I found an article by Lawrence Wilson called 'Infrared Sauna Therapy' the most informative.