Discussions By Condition: I cannot get a diagnosis.

Still frustrated. suggestions????

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: frustrated9967
  • October 4, 2008
  • 03:12 PM

Well I am a 41 year old married female with 3 teenage daughters. I have been suffering for almost 3 years now. I have had every blood test done known to mankind including non commercial genetic tests. I have had MRI, cat scans, nuclear scans, pft, echo cardiograms, stress tests, and have had no conclusive results.

My Rheumy says I have Anti Synthetase Syndrome with over lapping scleroderma, Polymyositis, dermatomyositis, myositis, ILD, chronic polyarthritis, and Raynard's.

Meds I am currently on. Methotrexate .9ml injections weekly, Plaquenil 200mg twice a day, Medrol (steriod) 8mg in am and 4mg at night, folic acid 1mg daily, liposin (blood pressure med) 5mg daily, inhalers, home oxygen 3.5 liters.

Here is a list of my symptoms:

1. severe fatigue
2. severe muscle and joint pain
3. swollen muscles and joints
4. mechanics hands (rough thick skin on knuckles and palms) elbows,knees and feet.
5. muscle weakness
6. shortness of breathe and cough
7. eyes get extremely red and almost like a blister over my eyes off and on, when eyes flare very painful and sore and dry.
8 GERG
9. IBS
10. High protein in urine
11. photosensitive. when in sun or heat develop red, raised blotches that burn and itch.

The meds I am taking started out working on some of the symptoms, but now seems to be wearing off injection only seems to work for 2 days now and not as well with the swelling and pain. Doctor wants to do a EMG on Monday morning and possibly switch me to cytoxan or IVIG treatment.

Its very frustrating getting all the tests done with nothing coming back positive other then severely bad PFT (pulmonary function test) and being put on all this toxic medicine without a conclusive diagnosis.

Any suggestions on this and what it might be would be very helpful.

Thank you
Terri

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