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- Thu Mar 26, 2009 11:55 pm
I'M 31 Y/O M, WITH DX OF MCTD. OVER THE LAST TWO YEARS I HAVE HAD FATIGUE. I HAD TO DECREASE MY HOURS AT WORK FROM 40 A WK TO 8 WK. OVER THE LAST 6 MONTH I HAVE NOT BEEN ABLE TO WORK BECAUSE OF THE FATIGUE. WHEN I PUSH MY SELF I GET DIZZY, FALL DOWN AND HAVE A HARD TIME FINDING WORDS.
MY COGNITIVE FUNCTION HAS BEEN IMPAIRED / DELAYED. I HAVE NO ANSWERS TO WHY. CT SCANS AND MRI ARE NORMAL. PSYCHOMETRIC TEST SHOWS A DELAY, IT WAS SAID TO BE DO TO STRESS. MY TOTAL TESTOSTERONE LEVELS FELL TO 75 WHEN IT WAS AT ITS WORST, FOR YEARS I HAVE SEEN MANY DOCTORS AND MANY DOCTORS HAVE TOLD ME MY S/S ARE IN MY HEAD. FRANKLY I'M TIRED OF HEARING THAT. AND IF IT WASN'T FOR MY PSYCHIATRIST WHOM HAD TO ORDER HIS OWN TEST TO PROVE TO THE OTHER DOCTORS THAT THERE WAS A MEDICAL REASON FOR MY S/S, I WOULD NOT HAVE BEEN DX W/ MCTD OR LOW TESTOSTERONE. MY RHEUMATALOGIST DOES NOT BELIEVE MY BRAIN STUFF IS RELATED NOR MY LOW T LEVELS. I CAN LIVE WITH THE ACHES, PAINS, RASHES, DIZZINESS I HAVE. BUT THIS FATIGUE AND MEMORY / COGNITIVE STUFF HAS TO GO. I HAVE READ STUDIES REGARDING SLE AND BRAIN FUNCTION. BUT I HAVE YET TO FIND A DOCTOR WHO KNOWS OF THIS. THE FACT THAT I HAVE DONE SOME OF MY OWN SEARCHING TENDS TO FUEL THE DOCTORS THEORY THAT I'M MAKING THIS STUFF UP. ARE THERE SPECIFIC TEST I SHOULD BE REQUESTING? I TRYING TO FIND A NEW RHEUMATALOGIST, NOT SO EASY.
ANY THOUGHTS WOULD BE MUCH APPRECIATED.
| Faye Lang, RN, MSW
- Sat Mar 28, 2009 2:34 pm
The symptoms and problems you describe fit entirely with MCTD, which could involve the criteria for SLE as part of the overall diagnostic picture. The memory issues and fatigue are very much a known part of your diagnosis, so I'm not sure why your physicians would doubt you. It's important that you receive appropriate treatment to prevent progression of your symptoms. Is there a major medical center within a reasonable distance? If so, seek an appointment with both Dermatology and Rhematology. Your experience in having to convince your doctors of the reality of your symptoms is common with your type of diagnosis. If you are able to attend a Lupus support group (which normally include all autoimmune conditions, not just Lupus), it would probably be very helpful. The other members have very likely experienced exactly what you are going through with your physicians, and they can clue you in to the best diagnosticians and treatment providers. If there is not one in your area, join one online. I encourage you to try memory improvement through puzzles, crosswords, learning a new language, etc. These have proven to be very helpful, even in profound memory-related diagnoses such as Alzheimer's Disease. It's an unfortunate reality that you have to deal with finding resources when you least feel up to it.
Good luck to you,
Faye, RN, MSw