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CPS and Multiple Sclerosis patients

October 27, 2011

It’s important that the CPS Alliance be able to reach out to as many sufferers as possible – as, yes, “sufferers” is the correct word. A large proportion of our members, through both the Yahoo group and the FB page, have self-diagnosed themselves, or just found out that this is their problem, after *years* of suffering in mystery. Perhaps it’s gratifying to finally discover what is wrong with you . The problem is that the longer it takes for you to find out what is wrong, the longer it will take to find a workable drug regimen, and the higher the dosages will be. I originally described it in the group as a metaphorical damage from fire or acid: the longer it burns without treatment, the worse the damage will be. One member got furious with that metaphor, since it was so unscientific. Perhaps pointing to the damage from infection or gangrene instead. *Any* illness will get worse the longer it is untreated.

The other major problem is that there are as many reasons to develop CPS as there are causes of damage to the Central Nervous System. Multiple Sclerosis patients seem to be particularly in the dark, even though up tp 30% will develop CPS. I was talking with one person on the CPS Alliance FB page, who described it this way:

My problem is that when I stop moving the pain gets worse… so I just keep moving. I have a hard time traveling because the vibration from the car makes things worse. I have a hard time walking normal, as my toes won’t move, and most of my pain is from the waist down. I was an egg sculptor artist, and now find it impossible to do because of shaking and loss of motor skills in my right hand. By the way, they have tried me on every kind of medicine, and they all make me shake like I have Parkinsons disease.

I too had terrible reactions to car vibrations after I first got CPS (from a stroke.) I found that I could only travel in a ca for 75 minutes, tops, before I had to stop and take an hour-long break. Still, it would take me perhaps half-a-day of sleep to get to a state where I could socialize, etc. The first Thanksgiving after my stroke was agony! We drove down to DC to have dinner with my sister-in-law and family members. The car ride was excruciating. We hadn’t even gotten out of NJ before I was bombarded with continual electric shocking, as if I was holding onto a battery or a live wire. I ended up spending half of the visit sleeping. (I am glad I made the trip, however, since it was one of the last times that we got to spend time with Kathy before she developed her hard-body transplant cancer.)

So if you want to travel, be sure to plan for extra time, and an overnight stay.

Through experimentation, and “pushing the envelope” by increasing the time on the road, I have been able to extend my travel time to 2 1/2 hours, with catch-up naps down to 4 or 5. (This is after 4 years.) One thing that really helps is doubling up on my gabapentin. Spinal-cord CPS patients, of course, won’t have that option.

I too have the shakes on one side, so it’s difficult for me to do any fine-motor work, such as threading a needle . Even in the kitchen, I am unable to do things like safely chop vegetables or pour liquids. I can’t carry a cup of liquid from one room to another without shaking it all over myself (Water, okay; coffee, bad!)

The lesion that caused the MS-CPS is probably on her spinal cord, at about the level where the nerves that control the sensation of her body that has been lost to the CPS. The drugs like gapapentin that affect the main brain neurotransmitter, GABA, are much less effective for her, because the spinal cord has glycine as the main neurotransmitter that controls pain. I don’t know if there is any research being done directly on spinal cord CPS. Nor do I know if there are any glycinergic drugs – drugs that affect glycine. I know that glycine is available as a supplement.

I advised her to talk to herneurologists,and find out in there are glycinergic medications that they are willing to prescribe as “white labels” – that means, for purposes other than the standard conditions. Spinal-cord CPSers also might want to ask about glycine supplements themselves. Remember that the amounts of gabanergic drugs that stroke-CPS patients take are usually 4 to 6 times as high as the usually prescribed dosages, so the amounts that they start out with may be far too small. They will have to keep on titrating up to find a level that works for them.

One of our FB posters noted that she was “told that treatment needs to be started sooner than later.” I am very curious as to where she got that information. Is the medical profession actually confirming what we’ve previously only noted anecdotally? I have noticed it myself listening to the reports from our CPSA members in the Yahoo group. It seems like the sooner you get treated with an anticonvulsant such as gabapentin or Lyrica, the more manageable your CPS will be – lower dosages, etc. I

t’s as if the mechanism of CPS (still a mystery) destroys even more and more GABA receptors – or sensitizes more and more neurons – so a larger area of the brain is affected. (Not being a neurologist, I am only theorizing as a layman. Whether it’s like fire burning down a house, or infection destroying healthy tissue, or some other sort of biological process, it’s all metaphors that seem to accurately describe brain-based CPS.

Yes, people who are fortunate enough to get put on an effective drug sooner after their brain incident (as I was, post-stroke) will find that their CPS (while constantly painful) is not as agonizing as it is for the people who went for years without a diagnosis.

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