WOMENS-HEALTH Messages for April, 1998: Porphyria/Lupus/Lyme?

Porphyria/Lupus/Lyme?

From: Kimberly (anonymous@obgyn.net)
Thu, 30 Apr 1998 17:19:56 -0400

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I have written here before so several of the docs here know of my current problems, but for those who dont....gyn problems (possibly endo or tumor...extremely irregular cycles, 2x/month, bad pain, hot flashes, etc ), and stomach problems which incl. chronic constipation for the past seven months, have to take saline enemas once a day (under dr direction) because cant be moved naturally, tried all laxitives OTC and by prescription, none work, which followed 4+ months of daily severe diarrea. (said it may be caused by endo or IBD) I am due for a lap, cysto, and hysteroscopy 6/22.

There is also a question of my having either SLE or porphryia. (Lupus because of the extreme sun sensit., muscular pain esp in hot weather, etc, and because two ANAs were positive, DNA test was positive, and significant amts of protein are found in my urine....Porphyria because of the sun sensit., stomach and hormonal difficulties, muscular pain, and my famous blue vaginal and spinal-area discharge. I am under observation for the lupus still because they said the tests arent 100% accurate, and I have not yet gotten tested for Porphyria. )

My problem right now is this: I have been having more severe muscular pain all over my body and fatigue. (I used to be fine with 7 hrs of sleep but now have to have nine-ten hrs, then am exhausted after an hr or so after getting up.) My muscles are very sore and it hurts to even touch some places on my back at times. It fluctuates, pain being worse in the evening I have found. It is everywhere, in my back, neck, chest, arms, etc. My neck cracks also when I move it, and sometimes it is too painful to move at all. I went to my doctor yesterday, who did a few blood tests: CBC, some other ones, and one for Lyme disease. I really doubt its lyme cuz I dont have a fever or rash that I can see, although she wanted to test me because I have horses who get them and work in my garden where the deer hang out often. Do you think this is a possibility? I wont know the test results till Monday :(

Or, are these symptoms typical of either Lupus or Porphyria? I hate to even go to the doctor and tell him all these things out of fear he will blame it on stress or something. I am in a lot of pain and really dont want to hear that....aside from the pain I am really not under stress, everything is running smoothly.....my gyn and GI were the ones that talked to me about Porphyria but my GP never heard of it. I dont know where I can find a doctor in my area who specializes in it, nor where I can get the testing done. (I am in Boston MA). The closet I heard was Baltimore, I am willing to fly there or somewhere else on the east coast if someone knew of a reputable doctor I could see. Or is there some other agency I can call to get the name of a doctor more in my area? Are there any other tests I should have done?

Sorry for the length....any replies are appreciated.

Thanks,

Kimberly

Next message: Lisa: "Re: Are Episiotomies necesary in First Births?"
Previous message: J: "Diet and PMS was Re:PTLS may possibly be a real syndrome?"

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