New here & looking for answers

[shannon81]

 So I will just give an introduction to myself & what's been going on. My name is Shannon & I am 29 years old & have been suffering from multiple problems for close to 5 years now.  I have endometriosis, but am lucky enough to have a son, but hoping for another baby again soon. Anyways, so about 5 years ago I guess it was I started suffering from numbness & tingling in my fingers. It then progressed to numbness & tingling in my arms (from my shoulders) all the way to my fingers & having extreme pain in my joints along these lines. I was then tested for honestly I don't know what. I had an MRI, CT, and nerve conduction study. All came back fine. I then started having episodes of mental fog & sometimes completely forgetting what I was doing (like when I was driving a car, so I had to pull over). I kept going back to my primary, who is an internal med. specialist, every time something new developed. When I became pregnant with my son everything seemed so much better except that I now had a lot of floaters in my vision, but I figured I could deal with that compared to everything else plus the opthamologist attributed it to fluid retention from the pregnancy. Well I still have those floaters today and am not pregnant so apparently that was not the cause. Anyways after I had my son everything seemed ok for a couple months, but all the pain & tingling came back on strong. Now I had pain in all my joints...even my toes. My primary did more testing and I actually came back positive for Lyme's Disease. They said according to the test it was in the early stages so after my 4 weeks treatment I should be fine. I thought everything would get better but it hasn't. All my symptoms seem to come for a couple months & then let up for a couple months. My primary did see me to a Rheumatologist who tested me for lupus & RA which came back negative. I stopped going to him as I felt it was a waste of time and money...felt as though he thought I was crazy. I even went to a therapist to make sure it wasn't all in my head since I've heard depression & stress can cause a number of things. The therapist thought I was fine and was mentally stable. I've basically given up on the doctors. Anyways a couple of weeks ago all my pains & tingling & numbness came back along with a new symptom. My lower gum gets so dry that I literally have to pull my lower lip away from my gum to get them unstuck. Anyways, after being through so much you can imagine I had done a lot of research on the internet and remembered from past searches something about Sjorgens Syndrome & thought now that I have this dryness in my mouth maybe I have a new clue to my mystery. Just wasn't sure what any of you all thought I fit the description and should be checked out again. I also have several areas of dry skin that keep popping up, just thought they were nothing (just getting older & losing the nice soft skin), but they feel like areas of scaly skin. Anyways I'm sure I wrote way too much here, but just wanted to get it all out. Hope everyone is doing well & is on the path to relief here. Thanks for any comments & suggestions.

[Joe S.]

Welcome to the forum. I am sorry that I do not have answers to your questions. Check out our signatures for what we are taking. Try sleeping with a polar fleece "mumps" scarf tied over the top of your head. Always remember to take time to breathe.

[Bucky]

Hi Shannon,

Welcome.  There is a wealth of information here on this site and if you are looking for specific topics, if you type in those word(s) in the search box to the top left of this page, it will take you to previous threads about that topic.

You can have Sjogren's and be sero-negative in blood work.  Many of our members have this.  Their doctors treat them for their symptoms.  Some doctors think if your blood work doesn't say you have Sjogren's, you don't.  If you find this, ask them if they will treat your symptoms, since it is NOT all in your head.  If they won't do this, then move on to another doctor.  Sjogren's and Lupus are close cousins, so to speak, and are hard to tell apart.  Some of our members have both. 

I've also read on here that some women do feel better during their pregnancy and their symptoms improve - only to return once the baby is born.

You mentioned about dry gums - this is something I would bring up with your dentist.  In fact, it was my dentist that recommended I be tested for Sjogren's because of the mouth dryness (as their instruments were sticking to the sides of my mouth).  Biotene products - which can be bought over-the-counter at Walmart, Walgreens, CVS, etc. are good for dry mouth.  A dry mouth can play real havoc on our teeth - and quickly, as saliva is needed to wash away bacteria.

If you could do us a favor and go back to this post and "edit" it (there's a button there for this) and put space between paragraphs it would help tremendously.  Some members will skip block posts as it is too difficult to read and concentrate on what we're reading.  Perhaps you'll get more responses that way. 

Again, welcome - I hope you find this site helpful to you on your quest to find out if you have Sjogren's.

Bucky

[angielyn]

If it helps I am sero neg. 

It took me a good 15yrs of being bounced around until I was finally diagnosed. I sooo know the feeling of giving up on Drs. but try not to, it's the only way things will get figured out. I also have endometriosis (total hysto. because of it) and actually just read something somewhere that said those with Endo. end up with higher chances of AI disease...

I also agree, if your Dr isn't helping you then find another. Some Dr's just may really have no idea how to help you. My PCP had no idea which is why he sent me somewhere else 

[Scottietottie]

Hi Shannon 

Welcome to Sjogren's world. I don't know much about Lyme's but four weeks sounds likje an awfully short time to try to get rid of it in going by anything I have ever heard or read. If I were you I would want another test to check that you are clear. It's not unusual to be on antibiotics for a year - or even more with Lyme's.

Take care - Scottie 

[bloodless]

ditto to angielyn's post. Unfortunately, autoimmune diseases are not as easily diagnosed as the episodes you see on "House". The process is long and drug out pitted with aggravating frustration. We here no exactly what you're going through. Fire docs that aren't helpful.

[shannon81]

Thank-you everyone for your good advice & recommendations. Sorry it has taken me so long to get back to you all. I've been having to deal with a sick lil boy, while at the same time being exhausted.
Also didn't think of this earlier, but I was diagnosed with chronic fatigue syndrome when I was 16 & accupunctre seemed to work well. I went at least 6 years without extreme fatigue. Anyways, I guess what I'm getting at is, could this have been the onset of this.
Thanks again everyone, hope you all are doing well.