Hiya everyone. I don't know where to start. I have had a lifetime of illnesses/ailments and surgeries and I have no idea if they could be linked to SS.
I have always been anemic. I had uterine tumors and endomitriosis as well. 6 surgeries later, I had to get a hysterectomy (at the age of 30). Thank god, I was able to have a child beforehand. I have always suffered from sinus issues and ultimately had the Functional Endoscopic Sinus Surgery...which HAS helped. I feel better than I did. but my face will bare down with pressure, so much so that my teeth hurt. And lastly, I have NEUROCARDIOGENIC SYNCOPE. oh boy, was that fun finding out. Needless to say, I just turned 36 and I'm on my second pacemaker.
I hear that stress isn't good for SS. I can't seem to get away from it. LOL.
I started getting a bald spot on the back of my head (Alopecia Areata). and it's gotten bigger and bigger and well, it's about the size of my hand now. I went to the doc with the hopes that she might listen to me. I had brought to her attention a YEAR PRIOR that i was losing circulation in my fingers then all of the sudden, they'd go all purple on me. yes, Raynaud's. but at the time we didn't know what it was. I thought it could have been carpel tunnel or something like that. BUT the balding spot on my noggin prompted the doc to issue a blood test.
she tested my thyroid, my ANAs and another test to make sure that I didn't have syphilis. Two of the three came back fine, negative. but my ANAs tested positive and so i was off to see the Rheumy. HE took even MORE blood, urine AND a chest xray. I get to meet with him on Wednesday to go over the results, but he has already called (well his nurse called) and instructed me to start on the med hydroxycholoriquin (plainly), that I had tested positive for screen's. primary or secondary or any other info, i will get that on Wednesday. I will be getting that Tomi, to start.
I'm very angry at my primary because for years YEARS i have been complaining about chronic fatigue, depression, insomnia, aches and pains, dry eyes/mouth/nose, but she just blew me off. I really thought I was becoming a hypochondria. Ugo.
Since I have been through so much through my life already, SS (as much research as I have done on it) seems to be "annoying" but I think I will be able to deal. Not much surprises me anymore...and I just add it to the list of blahs and shelf them. I have too much going on in life to let it get me down.
Thank you for letting me be a part of your world!
if anyone has any questions that i should be asking my doc on wed, please hit 'em to me.
also, I'm big on vitamins and trying to do things a more natural way. any advice either way on that?
have a great night everyone!
Andi :D
Good Morning!
Welcome to the forum. This is a great place in which you will receive great support. Hope you will feel right at home.
If you wish - you can click on profile, then form profile, go down to the signature box and insert info such as past medical history, medications, treatments, therapies etc. This will show up always on your post after your signature. It helps up to know a little more about you without you having to repeat it. Also, you may have some treatments or therapies we may be interested in asking you about.
Gosh, you are so young, yet have gone through so much. My heart goes out to you ( no pun intended ). I am happy you were able to have a child also.
Certainly all of the symptoms you have mentioned indicate some kind of autoimmune activity - one being SJS. Have you been tested for Lupus also?. The Alopecia makes me thinking of discoid Lupus. Do you have any other skin issues?
SJS is much more than just dry eyes and mouth, which are the hallmark signs. It can affect any part of the body.
Good that your Rheumy started you on Plaquenil. Be sure to have your eyes examined by a opthamologist. This medication can cause problems with eye sight.
Has your vitamin D level been checked, if not have the doctor check it. Several of us take vitamin D supplements because of deficiencies. I take 2,000 IUs per day. Some people take more or less. Sublingual B 12 is another good one. It helps with energy and neuro health. Omega 6 supplements are good for the heart and over all health.
Look for a post from JOE S. He will give you a link about the "spoon theory", this is in regards to learning to pace yourself and getting rest. It may be helpful for your family and friends to read. Often times they just don't understand how we feel. We must do what we need to do to take care of ourselves.
Look forward to hearing more from you.
Duchess
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
Here, I found the "spoon theory" link.
Duchess
Hello Andi, and Welcome! ;)
As Duchess states, I think you'll find this a warm and welcoming place, full of understanding and helpful people.
You certainly have had quite a few medical issues in your life already, but it may be some relief to know now that there is a reason for these other symptoms that were not heard by your former doctors.
When you see the rheumy, you might want to ask such things as:
How do they interpret the test results and what do they mean?
What sorts of treatment do they suggest, and is there a recommendation on how to begin taking the Plaquenil (hydroxycloroquin)? Some of us do better if we start gradually and work up to the full dose.
Please look around the boards; there is loads of information, and if you have questions, please ask away! We look forward to hearing more from you. Update us after that rhuemy appt, ok?
Again, welcome!!
Melinda
Welcome.
Welcome!
Hi Andi,
I hope you got some answers at your appt. on Wed. Please send us an update if you'd like.
Melinda
Hi Andi,
Let me also welcome you to the SJS World and family! If you're looking for a lot of information, please use the search engine located in the upper right hand side of this page. If you can't find what you're looking for, don't be shy and ask aways as there is usually someone about that might be able to help.
It looks like you're getting some good advice and there's not much that I can add.
Again, welcome and I hope that you find this board as amazing and wonderful as I have all these years.
Take care of yourself -
Patze
Welcome this is one place you can get answers to your questions. I know I sure have. When I have a question about SJS there is always someone who has an answer for me.
Welcome!!!!!!!!!!!!!!! :) :)
susanep
Hello. I wish you were better.
I'm not sure about the vitamins. Most everything makes my heart go thumpity bump. I have a heart murmur.
Andi, How did your doctor appointment go? I would guess that your could listen to tones but no use a zapper.
Hi Andi
Good to meet you! It sounds as though you've had a lot to cope with in just 36 years. If you read through recent posts, or put some key words (e.g endometriosis or cardiac problems) into the search engine on the site you'll find that other people here share some of your challenges. It certainly seems as though Auto Immune conditions like to travel in packs!
Like you I have endometriosis but - also like you - I was lucky enough to be able to have children. I also have a history of cardiac issues which culminated in heart surgery to replace two valves - aorta and mitral - in September 2010. Let me know if you have any questions about connections with Sjogrens.
How did your doctor's appointment go? Did you find the rheumy sympathetic and informed? (I'm always hoping for both in a doctor but I'd settle for just one of them to be honest!)
Let us know how you get on with the Plaquenil. You'll find lots of information here about adjusting to it, taking the tablets with food (especially yogurt) and other helpful hints.
Take care - Chickpea
ps Do you live in Norwich or is that just your name?
Hi Andi.
I hope your dr. appt went well.
If you try the Plaquenil..I hope you do well with it
Plaquenil has really helped me.
Let us know how all is going.
eye2dry