My name is Linda I am 37 and I live in Arkansas. I was just diagnosed yesterday by my local rheumtologist. Up until yesterday I had never even heard of this. He also diagnosed me with Ehlers Danlos Syndrome which I know nothing about also. For the past year or so I have been seeing my PCP and for awhle he thought it was MS but the neuro ruled that out in February and that is why I was sent to the rheumo. Any advice or guidance would be very much appreciated. Thanks
Nice to meet you Linda...welcome to this forum and you should know that this is the best place for
you to talk about anything and also get ideas...as for your EDS this is my first time hearing of it but
looked it up and was wonder what type do you have. Wish I could help on that but not very knowledgeable
but there is always someone who know a little about this or that so don't give up on us.
JJ
Hello Linda :)
Welcome to Sjogren's world! Below is a link about EDS and there are lots - maybe better than this one - if you 'google for it. I expect your rheumy has given you information about it anyway.
http://www.nlm.nih.gov/medlineplus/ehlersdanlossyndrome.html (http://www.nlm.nih.gov/medlineplus/ehlersdanlossyndrome.html)
Feel free to ask questions, chip into discussions or simply vent!
I hope you find the site useful.
Take care - Scottie :)
Hi Linda,
Let me also welcome you to the SJS World! Please do look around the board as there are tons of topics that you might be interested in.
I'm glad to hear that you have some really good doctors, wow. you are so lucky!!!
I'm sorry that I can't speak of EDS, but Scottie has put a good link up for you to peruse.
Take care and I hope to chat with you soon!
Patze (http://www.freesmileys.org/emoticons/emoticon-cartoon-021.gif) (http://www.freesmileys.org)
Hi Linda and (http://www.freesmileys.org/smileys/smiley-signs046.gif) (http://www.freesmileys.org) to Sjogrens World!
Please take as much time as you need to read all that you can or want to here...there is so much valuable information within these posts and many wonderful people to meet here from all over the world. If you have any questions feel free to ask...you are so new to this it just may take a while for it to sink in and work towards acceptance and to get yourself informed on the things that you have on your mind!
Take your time and jump on in whenever you feel comfortable!
WOOOOOOOW PIG SOOIE ,
derbygirl, Me too, NW Ark.
And like you, I had never heard of Sjogren's.
Welcome to a great group of sjoggies with lots of information, support, encouragements and compassion... and fun too. :)
We all seem to have different symptoms at differing sequences at different levels of intensity. Whether it is dry issues, paratid issues, or fatigue and other issues I hope you are searching out our many threads, there is much to investigate here.
As Lynmarie has pointed out... there is also a processing of acceptance and understanding, when you receive a DX of an auto immune decease you are unfamiliar with.
You are very fortunate to receive a quick DX, there is statistically an average of 6 years estimated to be determined with such a DX.
It took only a few months for my DR to hand me over to a Rheumy and receive my DX.
Welcome,make your self at home and ask many question, there are many people here with lots of answers.
blessings kimbo
Hi Linda, welcome from another Linda.
We have a couple of other members with EDS, and I'm sure they'll make themselves known to you soon. Meanwhile, as everyone has said, browse the posts, get to know us, and ask any questions that come to mind. Make sure you have a good dentist, who understands SjS, and while your at it, add an opthomalogist to your "ologist" collection.
Linda
welcome to the forum.
Alot to take in right now for you, your likley still a bit shocked so we wont burden you with info a plenty, ask any question you need to nothing is trivial if it sets your mind at rest, or helps.
So many knowledgeable ppl here, and alot of support between us all, your come to the right place, try to just take the diagnosis in, and if your anything like the rest of us that will take time, in the meantime, moan, ask question , or read, at some stage weve all done all of them :)
T x
Hi Linda Welcome to the site, my 4 year old daughter Jenna has SJS and this has been a wonderful place to learn information and make new friends. Hugs and Kissess Jonnell and Jenna
My name is Ter. I haven't been here for about 3 years. Back then I thought I didn't need this board. I wasn't as sick as most others. Three years so many things have changed with me. I'm 57 years old, a widow and now I think I have so many things wrong with me, I just can't believe what 3 years has done.
I have sjogren's, Fibro, Neuropathy (just found that out last week) sever COPD, and now arthritis in my right hand and wrist. Also have a spot on my breast. (doc says wait 6 months and look again) I suffer from depression too. Lord, I'm falling apart, and I bet with my Brain Fog I'm forgetting a lot of other things.
I'm on 3 inhalers a day, 8 meds and 5 vitamins. I'm full everyday just from taking meds.
I've had a awful cough since last Oct too so I'm on a cough med all the time.
I can't take steroids of any kind. I go wacky on them.
This is about as long I can sit here and type too. Burning between my shoulder blades from sitting in this position.
I see a lot of names from 3 years ago still. That's good!
I think it's time for me to come back again. Also think I fit right in now.
Peace be with you all,
Ter (went by Teralilly years ago)
Welcome back Ter!
I'm sorry for how badly you are feeling and that the last 3 years were not good to you. you know how it works here....read all you can....ask any questions you may have....and feel comfortable in the knowledge that others understand.
One comment I would like to make is about the spot on your breast...is that a spot in the actual breast tissue or on your chest wall from the COPD? If its from a mammogram and on the breast tissue...I would NOT wait 6 months.....I would go ASAP to a doctor who knows about breast diseases and get it double checked out....no problem in getting a second opinion for something like that! It could be nothing, but then again it could be something serious....just my opinion.
Hi, Linda!
I am new here too. I live in NE Arkansas. I have Sjogren's and Fibro. I've been trying to find a support group around here. Found one in Little Rock. Nice to know someone is close by.
jpd