Hi all. I am new to the board. I'm a 36 y/o single mother. I have 2 boys, the oldest is 16 and the youngest will be 4 soon. My kids are my life.
I have a very severe form of Sjogren's. It has done a lot of damage so far. My immune system's latest enemy is my circulatory system. My cardiologist is worried I will have some major heart damage if this disease doesn't get under control soon. Looking back I have always had some symptoms but they came out full force after a spinal cord injury in 2004. I was finally diagnosed in 2007 when my youngest was a couple months old.
I live in a very rural area in Southeast Kentucky and rheumys here are non-existant. It's hard for me to travel 3 hrs one way just to see a doctor. It has been a mess since this nightmare started.
If anyone knows of any good rheumys close to either the Knoxville or Kingsport Tn areas or Lexington, KY area please let me know.
Hi Princess so sorry to hear that you have sjogrens. this is a good place to be for info.
You regular doctor should be able to direct you to a good rheumatologist. You can also try contacting the hospitals nearest you, they should be able to recommend a rheumatologist.
Hi Princess Psycho - welcome to the forum.
Sorry, I don't have any suggestions for you for a Rheumy as I live in Illinois. Maybe, there will be other members who might have a suggestion for you. It's difficult when you don't have the team of doctors nearby that you need.
There is a wealth of information here on the forum. If there are certain topics you are particularly interested in, if you type in those word(s) in the search box to the top left of this page, it will bring up previous threads about it.
Every member here has a different story and are at different crossroads in their Sjogren's journey. Some have a mild Sjogren's, and there are others, whose Sjogren's is more aggressive.
We learn from each other. I hope you find this site helpful to you on your Sjogren's journey.
Bucky
Welcome to the forum, Princess P. You will need an advocate for every Dr visit. Keep a list of symptoms since you may forget them in the Dr office. It is best if you find what management techniques work for you. Some of us have listed what we use in our signatures.
Welcome Princess!
I'm so sorry to hear that you are having such a hard time and that you feel so isolated.
I'm afraid I live far away from you in the UK, so I can't be any help with finding a good rheumy in your area. Are there any support groups for other autoimmune conditions like Lupus or Rheumatoid Arthritis in your area? They might have information about good doctors.
Visit lots and ask all the questions you need to. We may not be near you in Kentucky but we're close by on the internet!
Thinking of you - Chickpea
Hi and welcome!
Sorry to hear about your situation. I hope you are able to find good care and I am glad your doctors seem to be helping you out so far.
Think about re-posting your question but with "kentucky area" in the subject line and you might get additional replies with suggestions.
I am in Western PA and we have lots of rheumatologists- but that won't help you!
Is there a teaching hospital nearby? Hopefully someone would be of help there.
Take care,
Rachel F.
Welcome Princess,
I apologize that I just got to your post, and welcome to the forum. ;) Guess what? I live in Southeastern Kentucky, too!
I can understand your frustration finding a good rhuemy who isn't a horribly long drive away. I go to someone in London, Ky and I live in Corbin. Not sure how far that is from you. I would think there should be some good ones in Knoxville, since it is a larger city.
I'm happy to send a PM if you would like his name and contact information. I'll also try to see what I can find out about someone closer to you if I know what city you're closest to.
Take care,
Melinda
Hi Princess and welcome to Sjogrens World!
I would also recommend going to a teaching hospital or medical center. I'm sure that the bigger areas you mentioned like Knoxville and Lexington have Universities nearby with teaching hospitals associated with them. I have found that when you go to a larger city you find more specialists who really know their information and have seen a lot more than many of the small town doctors just for the fact that they see a lot of people and are also involved in more studies and research.
I myself travel a couple of hours to go to the University of Chicago to see several of my specialists...to me it's definitely worth it in the long run!
Hope you find a good rheumy soon...keep us posted!