Discussions By Condition: I cannot get a diagnosis.

New and Desperate

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: Catnip821
  • December 20, 2011
  • 11:50 PM

Hi All,

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
3. Nephrologist
4. 3 Neurologists
5. Pyschiatrist
6. 2 GI docs
7. 2 hematologists
8. Immunologist
9. Cardiologist
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
7. Tremors
8. Migraines
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
2. MS
3. Lupus
4. RA
5. Scleroderma
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,


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7 Replies:

  • Hi again, Catnip. As I mentioned, I wanted to tell you a little about my Dad's story with autoimmune disease. In 1995 at the age of 56, my father had his first heart attack. It seemed to be the wake-up call he needed: he quit smoking, lost weight, and worked to add some balance to his work/home life. The heart attack did not cause lasting damage and everything seemed to be going well, but by early 1996 he had developed a limp.Dad saw a couple of doctors, but nobody could figure out what was causing the limp, so Dad ignored it. The limp got worse and he just ignored it. Within about a year, however, he started losing his finger and toenails (what we now know was pitting caused by psoriasis), and the whites of his eyes turned beet red. None of the doctors he saw had anything to say about his fingernails, and nobody could figure out what was causing the red eyes - he was diagnosed with pink eye, he was diagnosed with allergies, and when treatments for those didn't do anything, the doctors just said, "huh" and left it at that. At the time, his blood work was coming back negative for any kind of autoimmune issue. Fast forward another year and Dad's joints were so stiff and painful that he could no longer button his shirt by himself. He was a plant manager but he could no longer walk from his office to the plant (a distance I understand to have been two or three car lengths). He became very nauseous and lost his sense of taste -- bread tasted and felt like grease to him, for instance. Still, doctors couldn't come up with any kind of a diagnosis because the right blood tests were off at the wrong time. Finally, Dad lost his job and shortly thereafter ended up in the ER of his local hospital. The doctor on call's only question, after hearing all Dad's symptoms, was, "So... are you here because you'd like something for the nausea? A couple of days later Dad passed out in his PCP's office and was ambulanced back to a hospital. He was in kidney failure, and they still couldn't figure out why. A couple of months later he had a biopsy of both his sinus and his kidney, and was finally diagnosed with Wegener's Granulamatosis. I mention this to show that it can certainly take surgical intervention to get a firm diagnosis of an autoimmune disorder, and I wondered if you've requested one if you feel there is a high likelihood that this could be autoimmune-related?Hope you feel well over the holidays - my heart goes out to you.
    txpacotaco 3 Replies
    • December 24, 2011
    • 07:47 AM
    • 0
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  • I am in the same boat. I have alot of symptoms your experiencing plus more. I am at the end of my rope. I have seen many doctors too and nothing. I am petty sure that there is something going on besides fibro. I feel as though because my bloodwork is relatively normal docs don't take me seriously. And I guess because I don't have a neon sign flashing above my head telling them the diagnosis they won't investigate it. It's depressing and it angers me. I have been living with this for many years and it is getting worse. I wish you health and peace.
    Anonymous 42789 Replies
    • December 28, 2011
    • 02:19 PM
    • 0
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  • www.sumanasinc.com/scienceinfocus/sif_helicobacter.htmlThis might help with GERD
    goospanish 2 Replies
    • January 1, 2012
    • 06:00 AM
    • 0
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  • Some of your symptoms point to a mitochondrial disorder which is what they keep telling me I have. Have they checked your pyruvic acid, lactic acid levels when you feel severely fatigued with joint pain? (high lactic acid levels can cause this).Severe exhertional fatigue/sob can be a mitochondrial disorder as well. Only reason I wonder is becuase some of your troubling symptoms I also have, including a 50 pound weight gain over four years...... and none of it is from my kid becuase my pregnancy gain was 12 pounds which I lost immediately.I hear your frusrtation, but it does sound like a rheum doc needs to be diagnosing you, it's crazy that they refused, Have you tried cleaveland clinic? You could also get an IG infusion to help your system fight off illness at least (it's a start!)I'm a nurse also, and it's so frustrating to night have a diagnosis when you are so sick!
    xomissmelxo 1 Replies
    • January 4, 2012
    • 08:14 PM
    • 0
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  • http://www.whatislyme.com/ testing is NOT definitive. read read read learn learn learn inform inform INFORMI read so many of these posts and want to just scream it out loud.Watch the movieUNDER OUR SKIN
    vintage00gypsy 4 Replies
    • January 8, 2012
    • 02:45 AM
    • 0
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  • A quick google search of "anemia, edema, rapid weight gain, low IgG, blood in urine" results topped with http://www.igansupport.org/faqs.htmlSeems like a negligent option, but relevant.
    Anonymous 42789 Replies
    • January 17, 2012
    • 01:45 PM
    • 0
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  • Excess dietary protein is not a risk-free indulgence; it has been linked to obesity, kidney disease and osteoporosis.
    Anonymous 42789 Replies Flag this Response
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