I had/have one (it's in remission!), and another probably genetic condition. I don't know if mine are related to each other, since they don't know the cause of either, but I have to think they are - or else I just have bad luck!
Last edited by Natalie A; Jul. 1, 2012 at 04:52 PM.
I have hypothyroidism (despite always trending towards being underweight, if not a health weight...go figure) and possibly Celiac's as well.
Both of those diseases affect a number of women on my mom's side of the family.
The gluten free eating has cleared a number of VERY alarming and unpleasant digestive/intestinal issues so well that my dr. thinks that a biopsy/diagnosis can wait until I need to be scoped for other reasons since that is a somewhat invasive procedure!
My daily relationships with my loved ones have improved immensely as a result of figuring these things out (and switching my diet/taking synthetic thyroid hormones) as my general mood and energy levels have improved, but some days are still a struggle energy wise.
-Scleroderma en coupe du sabre
-Sphincter of Oddi hypertension
I am also HLA-B27+, IL-6+, and I have Ehlers-Danlos Syndrome type II with a vascular variant. I also have endometriosis, asthma, and partial malabsorption (vits D2, D3, B-6, B-12, C, and zinc). I spent 10 years on MTX, have tried every biologic but Orencia, and most DMDs including Cellcept and Cytoxin. I am currently on Actemra and thus far, it has been the best drug I've used to date with the fewest side effects.
I've never been in remission, but I can ride every day and work on my farm and stay off of high dose steroids. I have been very lucky in the sense that with everything I have, I've still managed to live a relatively normal life. In all honesty, the EDS has been far more debilitating than any of the other autoimmune diseases as there is NO treatment for it and it is - in my case and in many others - progressive. That has been the biggest detriment to my life and especially to my riding. I've had to have my entire left ankle reconstructed because of it and eventually I'll need to do my right as well. I've done serious damage to both shoulders and dislocate them while riding on a fairly regular basis. It prevents me from riding certain horses and doing certain activities; the only autoimmune disorder I have that comes close to causing the problems that the EDS causes is my posterior scleritis. It really sucks to lose a significant portion of your vision for days, weeks, or months, but I've never had a retinal detachment or any permanent damage to the optic nerve, so I count myself among the lucky ones.
Best of luck to you, littleblackmorgan!
Nine out of ten times, you'll get it wrong...but it's that tenth time that you get it right that makes all the difference.
I was diagnosed with Systemic Scleroderma 3yrs ago... I am no longer riding, but do continue daily life on the farm, have continued breeding (horses) and have continued to work a full time job (as a veterinary technician). I am on mtx, as well as prednisone and a slew of other pain meds, etc.... I believe it is "managed" right now. Just recently (8-9 weeks) I have started taking a food supplement called, Protandim, which is antioxidants (only 5 all natural ingredients). Since I have been on Protandim, I have been sleeping better than I have slept in years, I am waking up feeling more energized and rested. I have in 8 weeks been able to lower my prednisone dose by 1mg, which if any of you have ever been on pred for a long time (4yrs for me), you will understand how difficult even decreasing by 0.5mg is......
That's where I currently am... I am doing well I believe and now I am thrilled my mother talked me into trying the Protandim and I am proud to say I have just become a distributor (although a bit scared as I am not a "product pusher"), but I just can't get over how well I am feeling and thought if it makes a difference for me, who has all this going on, imagine what it does for the "normal folk"
Aside from that, OP good luck with your doctors & you will be in my thoughts and prayers!
My mom passed away 23 months ago from scleroderma. It started out superficially but she was quickly rediagnosed with systemic. It was very tragic when she passed because we thought we had it managed but a slip and fall kick started something and 2 months later she was gone :'(
My aunt has ms. Apparently autoimmune problems run on moms side of the family
**Friend of bar.ka**
Fils Du Reverdy (Revy)- 1993 Selle Francais Gelding
My equine soulmate
I don't think being RH-/+ has anything to do with developing an AI disease.
Autoimmune thyroid disease runs in my family, but it presents oddly. My dad and I tend toward being underweight as opposed to overweight yet have Hashimoto's hypothyroidism. By contrast, my cousin is obese with Grave's disease (hyperthyroid). My doctor finds this fascinating.
I have trouble losing weight, take 225 micros of synthroid, which doesn't seem to do much of anything for me, lost nearly all my hair, but thankfully it's growing back, and deal with horrible lymphadema, which has caused some pretty ugly scarring on my shins. Not to mention my constant companion, fatigue.
I'm starting the gluten free lifestyle to see if that helps with anything. I've heard that eliminating gluten can make you feel better almost immediately, even if you don't have celiac.