Hello all
I am new to the site and happy to find it. ;D I have always had dry eyes ( past 20 years) and over the past 2 years have had a lot of flare ups that have sent me to the intermed Dr. plus a neurologist o be tested for MS and neuropathy. Those showed up neg. But the neurologist said I do have Vasculitis. But my right side is still tingly and numb and my left foot and up my leg feels the same way. I have pain in my shoulders, migraines, fatigue and diagnosed with Fibromalgia about 6 months ago. So I have been taking Cymbalta and Gabapentin for that. About 2 months ago my eyes got really bad- I couldn't hardly see with them being blurry and sore. I went to the opthamolgist and she said it looks like I had football cleats go across them. So she put tear duct plugs in. They have helped some. :D But I am still using the drops. She is pretty sure on the Sjogrens because of how dry my eyes are, my skin is dry, arthritis, the list goes on. She asked what my rheumy said. I told her I hadn't been to one. Needless to say I have an appointment now, but its not until the end of July. :(
Has anybody else had a build up of autoimmune problems like this? From what I read it all goes hand in hand, but it's nice to hear from others in the same situation.
Thank you,
Leslie
Hi Leslie
Welcome to our wonderful Sjoggie family. I can empathise with the eye problems. For at least a decade before I was diagnosed I had blurry vision, dry, tired eyes, and ever changing eye prescription. I used to feel a real freak. Then the arthritis, asthma etc came on, and finally a diagnosis of Sjogren's. It was only a year later, when I was feeling really down, that I found this wonerful site. It has been a Godsend for me. I hope it will be for you too.
Kathyx
Hi Leslie :)
Welcome to Sjogren's world. I'm sorry you have to wait so long to see a rheumatologist. Is there any chance your GP/local doc would order an ANA panel of blood tests for you. It would be good to see the rheumatologist with the results in hand, or maybe they'd see your sooner if SSA/SSB were positive. It might be worth phoning the secretary and asking if you can get in sooner if anyone cancels.
Take care - Scottie :)
Hello and welcome, Leslie.
AIs do seem to travel in packs...I'm hosting a bit of a collection myself, but in one way it's made things easier for me, because no matter what I present to my doc's they look for AIs first! It eliminates a lot of the "it's all in your head" or "it could be your age" stuff!
Scottie makes a very good point...while you're waiting to see the rheumy, you could be building a nice portfolio for your first visit...blood work that your GP could order; a concise journal of symptoms; treatments you've tried and how they worked or didn't, and the comments of the other doctors you've seen and their diagnoses.
You'll probably find some questions you'd like to ask him if you browse through the posts here, too...things you may not have thought of as being connected, but which could be.
As to what Linda is saying, when I had an appointment with a rheumatologist, I had one or two pages typed neatly as to the timing of events, medicines tried, what worked, what didn't. I double spaced so it's more readable. I've seen the docs as they come into the room and they are holding their head in your folder (reading what the nurses wrote) saying hello, all the while never making eye contact.
I have a duplicate for myself so I can answer any questions quickly. They do appreciate this and I know it must make things easier for them. If I can get two or three more minutes "with" the doc, it's worth it. Now that I'm diagnosed, I have a running list of all my meds and every time I see one of my many docs, I always take in a fresh list. Good luck with your appointment. Lucy
Thank you for the suggestions. I will certainly add to the list I had started for the neurologist. I think I will try to go back to my reg. internal med doc and have him run some more blood tests. On the thyroid all they have ever looked at is the the main test, even though I have a goiter. I think I'll request the antibody test for that. It can all be a bit over whelming at times. Thank you all for the support and will certainly be reading a lot of the other posts.
Take care,
Leslie
Hi lesmom,
Let me also welcome you to the SJS World! Please do look around as there are a lot of topics that you might find interesting.
I can understand your dry eyes, whew, that and the sheer exhaustion were my first clues that somethin' ain't right Toto. I also could not see well enough to drive and had to quit for a while until I went to a decent eye doctor. With me and a few others here, the oil glands in our eyes are all clogged up causing the tears to evaporate way to fast. I was put on Doxycycline (to help "unclog" the glands - which does help a lot of people), but did nothing for me except cause me to become hypersensitive to it. Anyway, have been on Restatis for better than two years now, and they've been better, but I'm not complaining - I can see okay, and drive too! ;)
I too had a goiter, and it was pressing on my throat - not a fun thing. The GP that I was seeing didn't care, and kept telling me that there was nothing wrong with me - all the tests are "normal". Well, as she was using the old standards, I can maybe see her point (if I didn't have a ton of hypothyroid symptoms too), but knowing that the standards had changed a couple of years before all of this, sure didn't win her any praise from me - nor my loyalty as a patient (fired her).
I was never as collected, and together as Linda and Lucy (and still not :D), but I hit upon a rheumy was has taken over my care, and he's pointed me into directions I wasn't even thinking about. I've banged my head against the wall more times then I care to remember with this doctor, but in the long run, he's been there and has proved that he is actually watching what happens (well, mostly!).
Can you ask your primary to refer you to a rheumy soon?
Hang in there, and take care -
Patze
Welcome to the site. When you see your new docs ask them what they are going to do to halt the autoimmune attack on your body---or at least slow it down. The new theory is to treat the sjogrens, etc AU, Aggressively so that is doesn't cause more damage. This means prednisone, plaquenil or the DMARDS(disease modifying anti-rheumatic drugs)
The neurologist are often the ones to want to be more aggresive because of the neuropathy. Are you using the regular over the counter drops or are you taking the Restasis??? Just curious. Some docs use it with the plugs and some don't. Good luck. Irish ;D
lesmom
welcome to the forum, glad you found us, makes all the differenc ehaving the info and support his forum and its memebers provide.
my eyes went dry 30 years ago, IBS for 20 and ear infections and tinnitus last 3, then came the all over symptoms, funny how it brews for so long and we just get on with it, rarely ppl put the puzzle pieces together, glad you finally got a diagnosis and cant noe get treatment, sorry it wil take so long to see a rheumy, at least your now being sent
T x
Hi Leslie
I just wanted to add my welcome! The others have come up with some really good suggestions and I'd like to echo Scottie's and Linda's ideas about getting a 'portfolio' ready. Your GP can order the right blood tests, and you can prepare a diary of symptoms including when things improve/get worse, what helps etc. Sometimes headings can help order your thoughts ie changes in your headaches/eyes/mouth/arms/legs etc. I find I forget the most obvious things otherwise!
Irish mentioned the new more 'aggressive' treatments for AIs. I'm one of the people here who have been started on this by my neuro/rheumy combined. If you want to know more about the options just ask, either by posting here or messaging me.
Thinking of you - Chickpea
I had asked to go to a different neuro because I felt like he was just dismissing me because I don't show any "neurological problems" on my MRI scans or the nerve conduction test. He didn't really give me any answers as to why I was numb and tingly. As different flare ups come along, it got to be so frustrating. My internal med doc has been a big help in explaining things, but sometimes I feel like they don't care what it is you have as long as they treat your symptoms. Me- I want to know what it is I have. I would love to not have to be on so many meds. To answer Irish, I'm on the Restasis along with the Systane drops during the day. I'm 35 and am also taking HRT because I had a complete hysterectomy 4 years ago. The intern at the neuro's office told me- you need to get off those soon. I know that, but I am afraid of how bad my headaches will be. I tried going with out right after surgery and it was horrible. We live a little over 2 hours away from the neuros andbest available doctors, so its a bit tough for the picking.
Thank you so much for the support.
Leslie
Leslie
About the hrt - I understand that the highest risk for hrt is with the combined oestrogen and progesterone. As you have no uterus, you will probably just be taking oestrogen. This does not carry the same risks. Might be owrth pointing that out to your doctor. I'm 52 and have been taking oestrogen for 2 1/2 years, since a few months after my hysterectomy. Even at my age, my GP is not going to look at any changes for the next couple of years.
One of the main bonuses for taking oestrogen when you have SJS is that it helps to prevent the vaginal atrophy that comes with the dryness. Again, you could suggest that to your GP.
Kathyx
Kathyx,
I am taking estratest HS along with progesterone. The headaches were horrible without the progesterone- I tried for 6 months before I went back to the dr who delivered my boys and he agreed that I needed the progesterone added. I know that the estrogen helps keep moisture in so I really don't want to stop taking it- especially since I feel I am still fairly young. Do you just ever feel that this is just a lot to deal with? I have 2 older sisters and luckily they haven't had my same health problems. But some days you feel like you just have a big X on you to get every thing. Sorry for the out burst there, I just feel a bit isolated with things some times. :'( I try to ride it out and I am so looking forward to finding THE doctor that will be the biggest help.
Thanks again
Leslie
Hi Leslie
Yes, I do have days when I feel like a total freak. I have four half siblings, who are all hale and hearty. In fact, I feel really embarrassed when they ask how I'm doing, and sometimes I just hide symptoms and hospital appointments. I have not actually seen my 'baby' sister for two years, as she was going through a rough patch, and felt that my continueing health problems were keeping me centre stage!
Relationships can be really tough when you have a chronic condition, let alone several and, much as it hurts, sometimes you have to grow a hard shell to protect yourself from people who don't understand.
The one thing about this forum is that people will never judge you. They do understand, even if their symptoms are different to yours, and however, low you feel, you can rely on coming online and always finding at least one understanding person who will be there for you.
Keep in touch.
Hugs
Kathyx
Me too Leslie,
I feel terribly alone with this disease and at the mercy of doctors who are not spending much time thinking about my case.
Honestly, I do not know what I would do without this forum.
Janna
Count me in too Leslie, I'm on my third neuro, second rheumy, third ENT, 2nd endo, and the list goes on...sad, ain't it? :( I'm slowly building a team that I can trust to have my best interests in mind through all of this, not just another paycheck for them.
Oh Janna, I know what you mean about this forum being a saving grace, it gets so hard sometimes I just feel like crying.
Patze
Thank you soooooo much! I don't want to be a bother and I know it wears on my family if I say I don't feel very good. So I have learned to hide "it" Somedays that is easier than others.
Take care all,
Leslie