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Having UCTD and studying for USMLE steps
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Date Joined Sep 2017
Total Posts : 2
Posted 9/25/2017 12:20 PM (GMT -6)
Hi everyone! I am 37 and was diagnosed with UCTD in November last year and since then I have been on Plaquenil, first 400mg then 300mg and Prednison (first 5mg, then 10mg then 15mg, then tapered of at the end of May, then symptoms came again and I am on 5mg since beginning of August). I also take Pilocarpin for my sicca symptoms as well as ointments and artificial tears for my eyes. I take multi-vitamin, Omega 3, Calcium+vitD. I eat healthy and do yoga regularly (mild forms, such as yin, therapeutic, restorative, etc).
My symptoms included pain in the hands, wrists, elbows, feet, ankles and knees, "funny" ("electrical") feeling in forearms and feet, numbness (especially during the night), carpal syndrome (I wear brace), Raynaud, net-like rash, sicca. At the beginning, before therapy was introduced I also had malar rash, was photosensitive, had oral aphtae and ulcers, and had very strange swelling of my face and lips.
At the time of diagnosis, I had low C3 and ANA IFA speckled positive. All other tests were negative and have remained so. ANA IFA was also negative in April (I was in remission that time).
Lately, I also suffer from dizziness - all the vestibular tests are ok, MRI is ok. It feels like experiencing an earthquake or living on the boat. I was diagnosed in Europe and moved to the US few months ago.
Since 2009 (or maybe even earlier), I have been experiencing extreme fatigue and brain fog. I have been fatigued all the time. Fatigue completely ruined my life - at that moment I thought I was depressed, my psychiatrist diagnosed me with reactive depression, but she said that it was very atypical. She put me on anti-depressants for half-a-year, which made me feel much worse. In the process, I was diagnosed with PTSD and went through CBT and EMDR. However, fatigue persisted after therapy was successfully completed.
After my previous marriage broke down due to problems with infertility and my constant fatigue (my ex was an overachiever and I couldn't keep up with his pacing), I found a wonderful man, got married again. We generally share tasks like cleaning, etc. He is very gentle and supportive and does the housework when I feel too weak to do it myself.
Now, I am an IMG (international medical graduate) studying for Step 1 USMLE and I wonder if there is anyone who has gone through this? I saw some posts from 2009 written by a lady with a nickname Premed. I wonder if she managed to finish her med school and to match for a residency?
It is strange to experience life on both sides: as a doctor and as a patient, especially when diagnosed with AI disorder that makes you see so many doctors and feel helpless, frustrated and lonely. Med path is tough even if you are in super health, and can be very demanding for us with AI. But I would really really like to work again as a doctor. I used to be a brilliant student and a good caring doctor. I am aware of my limitations, but I wonder if it is possible to make a balance between carrier and disease?
I just do not want to end up living in my pains and aches and fatigue all the time, reading everything I find about
AI on blogs and in books...it simply became my preoccupation and I want to get out of this box.
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Date Joined Jun 2006
Total Posts : 1645
Posted 10/8/2017 5:08 AM (GMT -6)
Welcome to our forum hardworkingbee. I've been waiting too see if someone more qualified than I would answer your post. I was working full time as a lab tech while putting myself thru school to obtain a BS in Medical Technology. I was also raising my daughter through ages 6-9. My course requirements included 20 hours of Chemistry which I never found practical.
After getting my BS I packed my daughter, 3 dogs, 2 cats and 3 finches twice while working for the same company as a Health Services Administrator. I quit that company, became an epidemiologist at a large city health department and there started a nonprofit for antibiotic resistance that became state wide. I had 75 health professionals as volunteers. This was all additional work to my usual work. Anthrax sent everyone a flutter and I had to pull call at night calming fears at 0200 of those who thought they had anthrax. I then moved across county to work at a large government agency as an analyst which required travel to large cities. The project I worked was costing millions and after one year we still didn't have a working prototype. We worked long hours. My first Lupus flare hit, but I and my Docs didn't know what it was gand I worked thru it. I was sickened from spending tax payers money, my coworkers were demoralized, and we kept working longer hours.
I felt that stress might make me sick again, but being the hard working bee that I am I wrote a letter to the agency director and chief of our disease study. I received a bad evaluation was literally outcast from the project and placed alone in a room. No one was allowed to speak to me. I had an awful flare and was hospitalized a few days. My psychiatrist placed me on 3 months family leave. He was the only Doc who thought that my depression and anxiety were caused by an unknown physiological disease. The other Docs I saw focused on my mental illness.
The agency moved me to another section. It took two years for my diagnosis and an appropriate treatment regimen. Even with treatment I worked, showed, ate something quickly, went to sleep, awoke and repeated. Six years after moving to take this job I resigned and wrote my own disability. It was approved 3 months later. I had a good rheumatologist, but was often ill. I was hospitalized with pneumonia twice. The second time I was induced into a coma while in ICU. I have no memory for over two months that year and I was "fed" TPN the entire year. During March the following year I had sepsis and endocarditis.
A friend who is a doc said she could get me in to see her rheumy. He found that my IgG and all subclasses were low, so referred to infectious disease Doc who started me on IVIG Infusions monthly. Rheumy started Benlysta infusions monthly. Benlysta eventually was killing more B lymphocytes than it should so I took a break from it. While on break the cartilage in my right finally disappeared. (I had been a runner and swimmer for 20 years prior to Lupus.) 6 weeks ago I had a TKR. Everything I have told you started about
age 34. For my 60th b-day I received a new knee.
I don't think that there are many on this forum who reacted to Lupus like I have. Regardless, one never knows how AI will react with them while placed under stress. What you want to accomplish will be very stressful so can you be happy and reasonably healthy in your current situation? If you stay in this position will you always wonder if you could have handled the increased workload, thus making you unhappy? My advice is to keep your stress to a minimum and enjoy the life you have.
SLE '05, Fibro, Sjogren's, Raynaud's, major depressive disorder, anxiety; CVID Common Variable Immunodeficiency & IgG infusion monthly; Hypertension; angina, Osteoarthritis of spine, fingers; Osteoporosis, GERD, memory & confusion issues. Many meds
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