Medical Mystery

[mom_n_pain]

I am a 35 yr old female in chronic pain and have recently been diagnosed with Fibromyalgia.
My PCP says he feels in his gut that I have something neurological going on but Nuerologist says no. I have had all blood work known to man, of course nothing significant there. I have had MRI of brain and c-spine, Normal. My symptoms are many and I appologize now for the length of this. I am very desperate for answers and would appreciate any leads that someone could give me.
This started a few months after mono. Initially was GI pain, then female problems that resulted in complete hysterectomy AND appendectomy. 3 bouts of pancreatitis, ERCP. And then things really progressed.
My symptoms:
Chronic pain-all over my body
pain in back of head that goes down into neck,dibilatating
joint pain, swelling
hair loss
X-treme Fatigue
weakness
memory loss/confusion
Muscle cramps
cold intolerance
rash
eczema in ears
PLEASE HELP ME!
Again, I appoligize for the length.

[ggreg]

Dear Mom n Pain,
One other thing, the article about lupus said if you get a negative test, you could still have lupus, and if that happens, then check with a Rheumatologist to get the diagnosis.  Since your Rheumy said "the tests don't lie," I would suggest you go to another one, as he is apparently unaware that the ANA test can come up negative and you'll still have Lupus.  The only time the test doesn't lie is when it's positive.
GG

[mom_n_pain]

I have never heard of master's disease. I will try to find some info on it. Thanks so much. i am determined to find out what's going on and i so appreciate the thoughts from you and the rest of the communities.
*Hugs*

[patsy10]

I think I may have posted to you on another thread but I'm not sure.  Fibromyalgia is not a disease.  It's a syndrome, meaning a group of symptoms without a known cause.  This diagnosis is often given when they just don't know.  So getting this "diagnosis" is really giving you no answers.  I think many doctors just can't admit they don't know so they have to diagnose you with something instead of admitting they don't know. You could still have lyme disease.  Testing is not very reliable.  There is also a form of lyme in the south called Master's disease.  It's from the Lonestar tick.  It causes the same symptoms but does not show up on any testing.

[mom_n_pain]

Thanks so much for the input. I have felt so alone for the past year.
My lyme was neg of course. I too feel that my symptoms match up w/Lupus but again my ANA was negitive. My Rheumotologist said "The blood tests don't lie, you only have Fibromyalgia" My PCP says whatever this is it isn't inflammatory. He thinks it is neuro.
My Neuro says all tests okay. I do have carpal tunnel left arm.i don't know where else to go. I am afraid I will keep finding doctors that say the same thing and never will get to the bottom of this. I have seen soooo many drs!

[ggreg]

Dear Mom n Pain,
You probably have lupus.  Your symptoms match up really well, hair loss, ear canal problems, fatigue, pain, nose rash.  Read the link at the bottom of my post.  There is a test mentioned in the article that you should definitely ask for.  

http://www.medicinenet.com/script/main/art.asp?articlekey=54263

Hope this helps.  GG

[spastic]

Have they done a recent lyme titer? Have they checked you for lupus? I keep on getting a wierd color change in my legs, they call it livido reticularis but when I take a shower my right leg turns a lobster red color, I swore I was going completely mad but I took a picture of it and showed them. When I had my hysterectomy they didn't clamp off something and I had a blood clot from one ovary to the other (they left those so I wouldn't need hormone replacement), I thought I was going to die. Ever since my life has been hell! My pcp thought I had reflex sympathetic dystrophy but I'm afraid they narrowed mine down to 3 possibilities, ms, stills disease and/or a parasite in the blood. Not lyme though.  I believe dr's just say fibro when they can't think of anything else to call it. I call that the "dr syndrome" its frustrating, I know.

[mom_n_pain]

Thanks so much for letting me know I'm not alone! This has been a crazy ride and I want OFF! Yes, my thyroid is okay but my B-12 was slightly low,suggested I take B complex. Rhuemotoigist convinced only Fibro. I have know idea if all that I have been thru over the last year is related. I even thought it could be from Lyme disease (I had that in'05) But since you mentioned yours started after hysterectomy, I now wonder if that might be a link. I had mine in March '07. As for the rash, I get a redness across my nose, somedays more noticeable than others. It doesn't itch. Any ideas I can run by my docs?

[spastic]

have they checked your thyroid? I have similar symptoms and my rheumy and pcp are now sure i do not have fibro, they believe its neurological. the rash I have a question about, do you have fevers? let me know. my problems started after I had a hysterectomy, my doctors are narrowing the field now for me. if your not comfortable with you neuro go to another. good luck