I am a 45 year old nurse that cant get a diagnosis. I have seen many doctors and spent 2 weeks at the Mayo clinic and still no answers. I have something that has come and go over 25 years. I am calling then flares. My last one started in March and has not gone away. I have seen..
1. several IM docs
2. 2 endocrine docs
2. 2 rheumatologists
4. 3 Neurologists
6. 2 GI docs
7. 2 hematologists
10. 2 Pulmonologists
11. Not to mention OG/GYN, Infertility specialists and perinatologists.
I do have Graves disease, but my thyroid tests have been normal and they check them every few weeks. And I mean smack in the middle of normal not near high or low ends.
1. Debilitating exhaustion
2. Bilateral joint pain
3. Severe muscle pain
4. Brain fog - forgetfulness, cant find words
5. Butterfly rash that comes and goes
6. Hot and cold flashes
9. Diagnosed GERD
10. Choking whe swallowing, even saliva in sleep
11. Anemia - minor
12. Low IgG - minor
13. Low urine cortisol
14. Short of breath with exertion - severe
15. 3+ pitting edema in legs - this is bad, keeps tissue indented after pushing
16. My ANA and RF have both been positive and negative in the past, negative now
17. EMG - negative
18. EEG - negative19. brain MRI negative
19. Myastenia Gravis test negative
20. significant blood in urine 3 times, but each repeat test for blood negative
21. Slightly elevated BUN, low creatinine with ratio of 29:1 (normal is less the 20:1)
22. The BIG one...gained 40lbs since JULY! No diet change and this was before steroids!!!!!
I have more but thats the big ones. Each specialist just crosses me off their list because each positive symptom or test is minor to them. No one looks at this collectively and my IM needs specialists help to come up with Dx. I have been on 3 trials of tapering steroids. Never more then 60 for 2 days then decrease by 5 every 2 days. I feel great within 2-3 days. The response I get from docs is everyone feels better on steroids. The only thing that keeps me going is Percocet and I do not want to become addicted.
They have ruled out
1. Myastenia gravis
6. Anything neurological...ALS, MS, (everything negative on neuro exam)
7. Celiac disease - did blood tests and biposies
8. Adrenal - Challenge test normal
9. Lyme disease
10. Carcinoid syndrome
11. Both Nephrology and Cardiology say nothing wrong with heart or kidneys.
Help!!! They tell me I have fibromyalgia. Not to make light of that (as that can explain the pain and exhaustion), Fibromyalgia is a diagnosis of exclusion. How can they lump me in there when I have troubling symptoms that are not explained by this (anemia, edema, rapid weight gain, low IgG, blood in urine).
I have from time to time had an elevated ESR but nt right now. Some other markers for inflamation go high sometimes as well, but normal now.
Rheumatology refuses to diagnose me. They have an excuse for each symptom/test.
1. Don't have the rash when I saw her
2. No neuro involvement because no seizures and i am not psychotic (Dismisses brain fog and Migrain)
3. Sero negative - ANA comes and goes, would stay high if I had it
4. Joint pain but no swelling so she wont count it...and so on.
Oh, by the way... my mom has lupus, we also have MS, diabetes, and psoriasis, and RA in the family!
Please someone, point me to SOMEONE who can help. I am now seeking pain meds, but it is the only thing that keeps me going. I want a diagnosis so I can get off the pain meds, feel better nad start exercising and lose the weight. I don't want to be a martyr I want to be a survivor and liver of life.
I have great insurance and will go anywhere I can get help. Please share your experiences with me. WHile I will appreciate the empathy and sympathy, I would love to hear how someone like me got a doctor to treat them.
Thank You in advance,