Hi! I am New!

[heatherdawn]

Hi! My name is Heather. I am 23 years old, and just now getting my diagnosis. I have all of the normal symptoms ... like the dryness, etc. But, I also have other symptoms such as severe headaches, optic neuritis, muscle spasms, joint pain, dizzieness, sensitivity to heat, etc.

Recently I had a lip biopsy done. It came back with being positive for inflamation. Also, my partoid gland (sp?) is what my doctor calls larger than normal. I recently started going to a rheumatologist in Pittsburgh. We have done quite a few tests, blood work, etc...

Basically what I would like to know is what to expect. For years I was treated for MS, and it turns out that I did not have MS. However, the medications (such as Rebif) did work.

The doc put me on Flexoril (sp?) for my muscle spasm pains, etc. I took my first dose last night and tolerated it well. What other medicaions should I expect after my diagnosis comes back ... I am still waiting for some tests?

I look forward to reading more of what everyone has to say. I am a little scared, but then again I have been given so many diagnosises I think I can handle this...


Heather

[sleeeepy]

Hello Heather, It does sound like the symptoms you mentioned are similiar to MS especially the optic neuritis and muscle spasms, but I guess other autoimmune diseases like Sjogrens can mimic MS. They are sure you don't have MS?

I do know that it is possible to have more than one autoimmune disease at the same time.

I see that you are seeing a Rheumatologist in Pittsburgh. My doctor is also in Pittsburgh at the arthritis and autoimmunity center(Falk building on 5th avenue) wondering if it is the same as yours?

I have Fibro and Sjogrens and am pretty miserable all the time...sigh!!

I know it has taken me 15 years to get to this point. It takes awhile to get autoimmune diagnosed so hopefully your recent tests and bloodwork will give you some answers.

Keep us updated on what you find out.

Take care...............Mary

[heatherdawn]

Hi again. Well my rheum is at the Heinz 57 Center, the Lupus Center for Excellence. As for my neuro I am seeing Dr. Rock Heyman. They are sure I do not have MS, my bloodwork and spinal came back negative and I dont have any lesions on my brain or spine. I do have lesions on my optic nerve though. Hopefully soon I will get more answers.

Thank you!

[lynnmarie219]

Hi Heather and Welcome to Sjogrens World!

There are several people that visit here that I remember reading were first diagnosed with MS and then later told they didn't have it...so many of the symptoms of many autoimmune diseases overlap and are very similar...thus the reason for the difficulty in diagnosing.

I hope you get some answers after they go through all of your tests and can offer you some treatment plan that works for you!

Plaquenil seems to be the first medication many of us get offered to help with symptoms related to sjogrens/lupus/and others. This is a great med for most of us who tolerate it with very little difficulty or side effects. The main thing is that is does take a while to work (4 - 6 months) and that you do have to keep good checks on your eyes for rare but possible side effects.

Good luck to you and keep us posted on how you are doing!

[Scottietottie]

Hi Heather 

Welcome to Sjogren's world. I'm afraid no one can tell you what to expect. This disease is very individual. Some people get really ill and others suffer discomfort rather than illness and there vis no npredicting who will get what. It's meant to be slowly progressive. This is also variable. Some people suffer quick progression and others don't progress much at all. Some people suffer 'flares' which subside and others really don't.

The secret is to treat symptoms as they arise and to take every day as it comes and to make the most of the best days. There is no point worrying about what may happen - because it may not.

Now you have a dx hopefully you will get the treatment you need and be monitored.

I hope you find the site useful.

Take care - Scottie 

[Patze]

Hi heatherdawn,

Let me also welcome you to the SJS World and family!  Please do look around the board as there are oodles of topics that you just might find interesting and useful.  Use the search engine located in the upper left hand side of this page, and I tell you, I often come here just to read as I learn more from this site than I do the rheumy.

I can's say wether you have SJS or not as I'm not in the medical field either.  Now you do have some common symptoms, and I hope that you don't have it, but if you do, you're at one of the friendlist boards around; I sure think so!   Seriously though, if you don't find what you're looking for, don't be shy about asking a question or three as there is usually someone about that might be able to help.

I'm also on Flexeril to help with the pain and help with my sleep some (insomnia), along with Lyrica (also have fibro).  I'm glad that you're tolerating it well!

Like the others have said, there is "no formula" for SJS.  What may create havoc for me, you may never have a problem with and vice versa (my mouth is not really "dry", but my eyes are a mess).  And please remember, there are members here have only found out they have SJS because of blood work as they've never had a symptom, ever; while others have had to go on disability to survive because of SJS and associated illnesses.

My lip biopsy was mentioned that there was "some infiltration" but I guess it was not enough for a positive rating, but then I often wonder what it would be these days (had the procedure about six years ago, and will never do another one).

Good luck with the rheumy and I'll keep my fingers crossed that you get an answer to your symptoms.

Take care of yourself -

Patze

[Rgs]

hi heather
im having exactly the same issue as you have
please write me for my massage box
thank you

[Critter Mama]

For me, it started out as Undifferentiated Connective Tissue Disease, then Lupus with Sjogrens. My new Rheumatologist says he thinks it may not be Lupus but for sure Sjogrens. Its hard to say what ti expect because we are all different in how it affects us and how we are treated. My advice is to find an MD that has a clue about autoimmune...basically if you go abs they aren't sure what you have but sat to take an antibiotic, they don't know...our immune systems are suppressed, an unnecessary antibiotic can do more harm than good. It also helps that all of your doctors share you're test results abs information and work together. I still can't figure out how to avoid stress, if yuh figured that one out, please share. I had to file FMLA once and take a week off work and from that experience I can tell yuh that being able to take it easy and rest when you need to makes a huge difference, pushing yourself too hard well make it worse. You will learn your limits. Listen to your body. And try not to get too depressed.

[SjoDry]

Hi Heather.

I am thinking that I may have spoken with you? I run the Sjogren's Syndrome Support Group in Pittsburgh. I talk to lots of Sjoggies...so between that & my brainfog,
well..you know what happens.

If I have not spoken with you, I hope you will get involved in our group.

I am happy to speak with you by phone & send you materials as well (if I have not already). I would love to speak with you about your physician, as I maintain a physician's list for all of
the calls that I get.

Welcome to the group Heather!
SjoDry (Sandy)

[SjoDry]

Sleeeepy,

Ditto for my response to Heather.
Let me know if you are already in our group.

I always tell our local SIP members about this group...so likely you are someone that I may have already spoken with.

This is truly a great group..you will learn so much here, as well as to get a lot of support.

Take Care.
SjoDry (Sandy)

[Linda196]

Please take note that the original post in this thread was from July 2010, and heatherdawn is no longer a member

[SjoDry]

Hahaha,

Thanks Linda,

I am having a good laugh at myself. My floaters must be kicking in.

SjoDry

[susanep]

Well, I looked at all the recent  responses, and went back to see if I missed something, because I noticed it was from then.

Please don't mess with what little brain I have. lol.....J/K 

susanep