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21 illnesses...LUPUS?

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Old 02-15-2010, 04:56 AM   #1
Join Date: Feb 2010
Posts: 8
stone19fl HB User
Question 21 illnesses...LUPUS?

Hi. i have a HUGE list of medical problems that started when I was 13 (right after getting my period) and have gotten worse over time ( i am now 30) I went undiagnosed with a majority of the problems til I was around 20 (i had great insurance at this time). Here is a list of my 21 ailments:
1. Stage 4 endometriosis (grapefruit sized endometrioma currently on ovary)
2. Poly Cystic Ovarian Syndrome
3. Interstitial cystitis
4. Irritable Bowel Syndrome with constipation (can't go without an aid)
5. Reflex sympathetic dystrophy (story below)
6. Asthma
7. Carpal Tunnel in both wrists (developed same time as RSD)
8. Plantar fasciitis (both feet)
9. Tendonitis (both feet)
10. Pilonidal Cyst
11. Folliculitis
12. Chronic Migraines
13. Polyps in nasal cavity causing chronic Sinusitis
14. Major Depressive Disorder
15. Post traumatic Stress disorder
16. General Anxiety Disorder
17. A.D.D.
18. Allergies
20.I can't remember these last 3 many!?

Sypmtoms include:
sensitivity to light
mylar rash that comes and goes randomly
back pain
constant thirst
chronic muscle pain (focused in neck. back and shoulders)
constant twitching of legs
excessive tiredness
dizzy spells
cyclical weight gain and loss yearly..fat... skinny...fat...skinny...

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Old 02-15-2010, 05:51 PM   #2
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Re: 21 illnesses...LUPUS?

Dear Stone, hi & a big welcome. I'm only a patient, so please read what I write in that light, OK? Of what you listed, I also had pain, fatigue, elevated sed rate, low-grade fever, leukopenia, etc. at age 13, when my periods began. Fast forward to mid-20's: what was labeled irritable bowel---yet multiple upper GI's, lower GI's, sigmoidoscopies, and colonoscopies found nothing definitive. I'd fall below 95 lbs. (bad, I'm 5'8"). Also major hair loss & B-12 anemia.

In early 30's, migraines. Also urinary misery = burning & frequency. My urologist suspected Interstitial Cystitis but didn't want to do the definitive test, because you have to be knocked out for it, and I was already so shaky.

In my late 30's, rashes that were first red bumps, like mosquito bites. Later on, those expanded into circles with clear centers, on arms, back & torso, but never on my face. I saw 6 six local dermatologists & had multiple biopsies, but no answers.

In mid-40's---disgusted beyond words---I took myself to a teaching hospital and was Dx'ed with a "subset" of lupus called Ro-lupus, negative ANA but positive anti-Ro. That's a very low-odds lupus diagnosis, by the way; and I think that's why I languished so long. I was negative for antiphospholipid syndrome (APS), though. FYI, that's a blood clotting disorder that often coincides with lupus. APS can cause migraines & all manner of other things.

So... have you ever seen a rheumatologist? How about a dermatologist, for your facial rash? To me, it would make sense to try both.

And have you read about lupus & antiphospholipid? There are permanent info posts at the top of the thread list here. Look for the thread titles that have the word "sticky" in front of their titles. Read these & keep reading, is my advice. You are your own best advocate!

I'm sorry for your problems & can reeally sympathize. You must be hugely disgusted! Whether or not some "single bullet theory" could explain all or most of your issues, I couldn't say. But, gee, it's a EXCELLENT question to pose, isn't it? I hope you post again soon. Warmest wishes, bye, Vee

Old 02-21-2010, 10:18 PM   #3
Join Date: Feb 2010
Posts: 8
stone19fl HB User
Re: 21 illnesses...LUPUS?

i dont have insurance or working right now. and my bf was layed off...i was denied 2 times for disability...gonna try a disability laywer that is friends with a fried of mine..hopefully do it no charge...see where that goes..i really need disability! otherwise i am gettin current obgyn treatment at the free clinic..gotta see if they offer dermatologist and/or rhuematologist visits....i saw a rheum in about 2004 when i was diagnosed with the RSD...he was a follow up from the ER that i went to bc of it..and he diagnosed me with carpal tunnel....but nothing else was brought up at that time

Old 02-22-2010, 05:35 AM   #4
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Re: 21 illnesses...LUPUS?

stone19fl, was it you who said something about elevated glucose being found during an ER visit? If yes, I hope you try to see an endocrinologist at the clinic you use.

I'm only saying that because I *think* diabetes is common in people with PCOS---so you should ask your drs. As we all know, diabetes really must be controlled! I've known a few people who thought they could ignore it, and they were dreadfully wrong! Good luck, Vee

Old 02-23-2010, 08:37 AM   #5
Join Date: Feb 2010
Posts: 8
stone19fl HB User
Re: 21 illnesses...LUPUS? glucose is really low...the only time it went off was when the dr's put me on metformin

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