Member
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Join Date: Dec 2006
Posts: 724
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Member
Join Date: Dec 2006
Posts: 724
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This thread is incredibly enlightening. I brings a new vista to the spasms and cramps which I have had--used to have more than now. I thought the MS hug was just a squeezing, which would involve tense muscles, a sense of not breathing well. But I didn't know it would include the stabbing/aching pain which I had in the abdomen, about the middle of the diaphragm, which I have in recent years attributed to the Porphyria, which is notorious for ab pain. Of course I had bad constipation, sometimes "obstipation" until I got on big doses of magnesium.
I still have the stabbing pain part of this. I get it mostly at night, when relaxed, and wake up with a very sharp pain in the diaphragm area. I feel like I am as good as dead.
I used to have this more frequently---much more frequently--before the menopause and before Porphyria diagnosis. The menopause got rid of some of the estrogen which had been triggering Porph ab pain. But now I realize, after reading this, that MS could have done a job on my middle too.
If I were not sensitive to all of the Porph triggers, I would go back to saying I had primarily MS as the neuro ailment which causes these things. I think there is a mysterious cross over anyway, between MS and HCP type Porphyria (that's Hereditary
Coproporphyria or one of its mutations)
I know that the reason the stabbing pain is back is due to the Interferon I was taking for my "new" disease, Polycythemia Vera. I had almost gotten over it, for many years, only having it a few times a year. I am off Interferon now for 12 days, so I may go back to my usual state as far as the spasms and pain goes.
One thing which indicates a Porph connection is that I get the "hug" when I have a severe trigger such as the formaldehyde in flu shots or polyethelene glycol which occurs in many drugs and in one form of Interferon called Pegasys (it's the Pegalating or timed-release agent in Pegasys). it is in MANY drugs and cosmetics, which I do well to skip--I read a whole lot of labels. I get it from mercury in flu shots, I meant to say, but of course there is often formaldehye in shots like that too, including the Interferon I was taking. So I'm not giving up my Porph dx, just saying I get "the hug" too.
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