UCTD/SLE/ unexplainable scatoma, and more..... please help

[futuremidwife85]

I am a 22 year old white female, senior in college majoring in nursing.  I use to be a very very active young woman who was always up for anything, now it take all my energy to get up in the morning and not fall asleep in class, clinicals, or work.  I have a strong family history of autoimmune and hematologic disease including: Mother- SLE and RA, OA; Father- RA, OA; Sister- SLE with kidney involvement; Maternal Grandmother- Fibromyalgia; Maternal Grandfather- SLE, Beta Thalessemia intermediate; Maternal Aunt- Beta Thalessemia Intermediate (along with her son and 2 grand daughters); Fraternal Grandfather- Ankylosing Spondylitis.  These are the symptoms/issues I have been having for over 3 years, but more strongly in the past year:
- brain fog
- extreme fatigue
- migraines
- pain in all muscles, and almost every movable joint, especially in my spine, hips, shoulders and hands
- twitching in muscles that last for days
- chronic UTI's and kidney infections
- severe uterine bleeding that resulted in a D&C and insertion of a Mirena IUD to control future bleeding issues (not from a miscarriage)
- severe hot flashes, mainly occurring in the late afternoon through the evening
- severe 'unexplainable' abdominal pain
- anemia (test last week it was at an 9.6)
- heart palpations
- hair loss on scalp, but hair growth on face, neck, chest, abdomen
- malaise
- jaundice
- rashes on my face and forearms that intensifies when in the sun for too long
- constipation
- joint stiffness that is worse in the morning
- recently I have had an unexplainable scatoma develop ONLY in the upper left quadrant of my left eye that respects the meridian (right eye is 20/20 and is fine).  This has resulted in approximately a 25-28% vision loss in my left eye that continues to worsen.  My case has been brought to the attention of many neuro-ophthalmologists all over the nation.  They thought it was due to the Plaquenil, but I was only on a very low dose for 10 months.

Other things you may need to know: according to doctors, my body is EXTREMELY hypersensitive to drugs/chemicals.  I cannot handle any anesthesia or narcotics without severe nausea, vomiting, and swelling.  I am allergic to levaquin, ketek, penicillin, doxycycline, absorbable internal stitches, all seafood, and all nuts except peanuts.  I eat a 100% organic diet, mainly consisting of raw fruits and vegetables.  I have an ANA titer of 1:140, positive HG-B27, degeneration in my sacro-iliac joints and S1/L5-T10/11 with an anterior herniation of the T7/T8 disk, chronically low hemocrit/hemoglobin, mildly elevated platelets, and elevated sed rates (if you need to know anymore blood test results, just respond and I'll give them to you.)  Also, I have been on muscle relaxers (zanaflex and flexeril), anti-inflammitory drugs (anaprox and mobic, and pain meds (ultram and ultram ER), and plaquenil, all which have not helped at all; some have even made me feel worse (ie-plaquenil).  I also take metformin ER for PCOS that has been diagnosed since I was 15 years old.

This week alone I have an appt with the OBGYN, hematologist, neuro-opthamologist, Asthma/allergy specialist, and the family doctor (who has ordered an upper GI series and an ultrasound of my gall bladder and liver because he believes all the drugs have impacted my stomach and liver).  The only 'diagnosis' I have been given is Undifferentiated Connective Tissue Disease, but from my research, this doesn't seem to be a diagnosis I agree with based off of the evidence and medical literature.

In the past year I have seen 14 doctors in specialties including hematology, rheumatology, OBGYN, neuro-opthamology, and othropaedics.  Honestly I am quite tired of not having an answer.  At this point, I don't care what the answer is, I just need to know what is going on and how to make it better.  I can't live this way for much longer.  I feel as though no doctor is taking me seriously because I am 'just a young dumb girl that doesn't know what she's talking about.'  If you have ANY insight, information, tests I should ask for, therapies I should talk to them about, JUST ANYTHING that could help me, I'd greatly appreciate it.  Thank you.

[cez_anne]

Your symptoms coincide with SLE. I also have SLE. Diagnosed it 5 years ago. Took plaquenil and prednisone too but acne was the only side effect. I never had any kidney problems. I monitored my blood tests and urinalysis every month. Im in remission right now and living a normal life, doing things I normally do and enjoy.
I just hope you would be able to know what you're undergoing to. I also had that same feeling before. It's quite hard especially if you it hinders you from doing the usual routines. You can search for the LUPUS FOUNDATION of AMERICA on the internet and you will be able to fined people with the same case. It is better to have a support group other than your family and friends because they will understand you more especially if you're experiencing the same situation.

[futuremidwife85]

Thanks for the website, I've searched on it before.  This is the 3rd rheumatologist I have seen.  the neuro-opthamologist is sending me to the Mayo clinic for tests to look for a paraneoplastic syndrome.  From my understanding through research, a paraneoplastic syndrome is the affects that certain cancers have on the body in places other than where the cancer is located (i.e.- ovarian cancer with neurological symptoms before the ovarian cancer is discovered).  Depending on the results of these tests, he said I may have to have a full body CT or MRI to look for tumors.

[sktmom]

I think it is time you revisited the rheumatologist. It isn't unusual to have more then one underlying autoimmune problem. Autoimmune problems may take some time to show in blood tests. Also with a family history of so many autoimmune problems, it is worth getting another opinion. Here is a site that is filled with information  www.sclero.org You can find information on just about anything there. Good Luck.