Medical Mystery - I need help!!!

O

olliewilko

New member
Hello. I have just come home after suffering a TIA, which no one knows why I didn't end up with permanent damage in a stroke. I have also been diagnosed with Fibromyalgia, Migraine, PCOS, Hashimotos Disease, possible pituitary tumor, Endometriosis, Ovarion Cysts, Portal Hypertensive Gastropothy, NASH, and the diagnoses go on and on.

My symptoms include 90 pound weight gain in 3 months, severe swelling of hand and feet, no appetite whatsoever, fatigue, chronic migraine, chronic widespread body pain, 2 lumps behind left ear, lump on bottom right rib, and
the list can go on and on.

I need help from people who can look at my body as a WHOLE and not just a bunch of bits and pieces. I am 37 years old and in bed almost 24/7 and now
having strokes and clotting problems. It all started after the birth of my 2nd child 8 years ago and then more severely after I ran my 1st marathon in 10/2005.

Please, please, please help me or send me to someone or someplace who can! I am desperate and my body and life is shutting down around me. I need your help!
 
so what are the doctors doing about all these diagnosis? What treatment are you getting? Teaching hospitals have usually been the best, imo. They are usually up to date and willing to try new procedures more readily.
 
So far, they are chasing symptoms and trying to maintain my fibro/migraine pain. They are also giving me thyroid meds, meds for swelling, anti-nausea meds. I myself am modifying my diet and lifestyle and have been for quite some time in SPITE of the fact that I gained 100 pounds in 3 MONTHS without any diet or activity changes after I ran a marathon and I have NOT been able to lose the weight even though I no longer eat a full meal but 1-2xs/wk. I have NO appetite and am never hungry, yet I am still 100 lbs overweight and that brings about other symptoms that need to be taken care of as well. They found out the weight gain had to do with (2) liver meds causing a toxic reaction together. I continue to be unable to see very well and have struggled with double vision and eye pain the last few days as well as extreme dizziness coming and going. We have been begging for an all over body scan, but no one will consider it. We finally got my primary care and pain mgt docs to agree that I need to be admitted somewhere and let them do everything over with fresh eyes and see what they can find.

Do you know of the research hospitals in the US? We live in Southern California and would like to stay as close to home as possible, but we will go wherever we need to get help. We would grately appreciate any contact info or any other information you could give us that would bring us closer to good health for me. Thank you very much for responding to us!

Look forward to hearing from you-
K.J.
 
I would think UCLA or USC should have affiliation with a major medical center. I"m not really familiar with any other colleges in SoCal, but you might be able to find some colleges that are near your town...and see if they have a program for medical doctors.

I"m curious about the "possible" pituitary tumor. Was that ever followed up? That certainly would account for at least some of your symptoms because it is the main hormone regulator in your body...and hormones are everything! Have you been to an endocrinologist?
 
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