Hi Everyone!
I am trying to sort out these unusual symptoms I am having and am so glad to have found your site. Info here is great, especially for those of us who have extra symptoms on top of dry eyes and mouth. I started with a neurologist in the fall and suspected MS. That was ruled out and recently have developed dry eyes and mouth on top of weakness in my knees which comes and goes, fatigue, bloating, feeling like my arm is loosing circulation (that is a fun one), and joints/muscles that just are not the same anymore. Overall, I feel pretty lucky right now having dodged MS for the time being! I had a bunch more weird sensations/weakness in the fall but those have resolved. I do have to say the neurologist at the teaching university was much more thorough than the first neurologist I saw. And tomorrow I will see a rheumatologist. I hope he is good! If not, I will ask around to find someone who is. I live in Western PA and we have loads of doctors to choose from. Thanks everyone for sharing your experiences. I will be back after my appointment tomorrow. It is great to hear from others who are going through similar experiences and share frustrations and strategies. I wish you all the best. Looking forward to posting and reading more later.
Rachel
Welcome to the forum Rachel F. You may want to contact "One and only" to find doctors to avoid in PA.
Some of us have posted what we are taking in our signatures to help others. I can not take MTX or Plaq. so I use alternative therapies.
False Negatives and false positives seem to be the rule for AI diseases. Find what treatments and therapies work for you. If new symptoms develop, check the side effects of what you are taking first.
Rachel,
Welcome to Sjogrensworld! I hope you find helpful information and friendship here. We'll look forward to getting to know you. Best wishes in your quest for answers and treatment options!
Cheryl
Hi Rachel :)
Welcome to Sjogren's world. Good luck with the visit to the rheumatologist. Do post about how you get on.
I hope you find the site useful. Feel free to ask any questions you want to ask and jump in on other threads when you feel like it.
The site is certainly friendly and supportive.
Take care - Scottie :)
Welcome, Rachel ;)
I think you'll find lots of great info. here and friendly, helpful people. Please let us know how the appt. with the rheumatologist went for you.
We'll look forward to getting to know you and hearing more from you.
Melinda
Hi Rachel,
What I find amazing is how different all our stories are, but still with common threads. I hope your rheumy visit went well, it helps so much to have supportive docs. I find mine is helpful, but do check out the alternative therapies as well We are all so different, you'll want to try things to see what works best in your individual set of symptoms.
Hi Everyone,
Thanks for your kind words.
The rheumatologist ordered another round of bloodwork since my most recent bloodwork was 6 months old. He said I should see an opthamologist and said it could take a couple of years to diagnose sjorgrens or other connective tissue disorder since they wax/wane. He seemed very thorough, but I was wondering (and too afraid to ask) why no lip biopsy? Are there false positives with that route, I wonder?
This weekend I was very tired. Don't feel like a 41 year old should.
Thanks again.
Rachel
(no diagnosis except low Vit D)
Hi Rachel, and welcome.
Like you, I was first diagnosed with MS - my full story is on the staff page. This site was started by two wonderful women who met on an MS site, and realised that they had similar stories that didn't fit any MS picture.
In my opinion - humble or otherwise! - I don't think you need a lip biopsy. In the UK where I live they are not routine and SjS is diagnosed by bloodwork and symptoms. It's very hard being in diagnosis 'limboland' as many of us here understand. If I'd found this site as early in my SjS journey as you have I would use it to share experiences of individual or puzzling symptoms, and not worry about what label is attached to them.
Do you keep a symptom diary? I'd strongly advise it - buy a lovely journal just for the purpose, or keep a section of your daily calendar - so that you note down absolutely everything that might be relevant. Plus how you're feeling in yourself, which matters just as much.
Take care and come here and visit often.
Thinking of you - Chickpea
Thank you!
I come and check out SJS World every day. :)
Hi Rachel,
Sending along a quick "Hello" and welcome to Sjogrens World!
I also hope you find this site informative, friendly and supportive!