Hi Everyone - I'm being tested for Sjogrens after a year of strange symptoms that include muscle aches, muscle spasms, joint pain, pins & needles sensations, muscle twitches, memory and focus problems, peripheral neuropathy in my feet and hands, extreme stiffness in the morning and when standing up after sitting for long periods, painful feet when standing, exhaustion - and finally, but most recently, extremely dry eyes. Regardless of all of these symptoms, my primary care doc kept telling me it was "just menopause." My OB/GYN said it was not menopause. My Endocrinologist is simply monitoring the growths on my thyroid, but has not weighed in on the cause of the strange symptoms. The first neurologist said there is nothing wrong with me and it's probably hormonal. The second neurologist, who I saw yesterday, was the first physician to mention Sjogrens. She said the tests will take a couple of weeks, so I should have a diagnosis by the end of the month (one can hope). Everything I have read about Sjogrens, to include the posts on this forum, seems to match what is going on with my crazy body. I started to think I was just being a hypochondriac until I met with the new neurologist who told me that something is definitely wrong. This has been a very frustrating journey - I look forward to chatting with all of you in the future should my diagnosis turn out to be Sjogrens.
Hi Mimi - I'm new here, too. I have a lot of the same symptoms you have. Muscle aches, spasms, joint pain, pins and needles, twitches, memory problems. The only symptoms I don't have (yet!) are the dry eyes and mouth! But my rheumy says I have Sjogren's and she thinks that's what is causing my symptoms. I'm ANA+ and SSB+. Have you seen a rheumatologist? Did you already go for testing? My antibody testing has only taken a few days to get results. You are right, it is very frustrating and also very frightening. 3 months ago I was a marathon runner and I feel like my body is being stolen from me, it's hard just to survive the day right now. I'm still not convinced that Sjogren's is causing me all of my symptoms, I'm also seeing a neuro-muscular doctor and an endocrinologist (I am endocrinologically challenged - have both Graves' and Hashi ab's, plus adrenal tumor and if that weren't enough, I just found out today I have a pituitary tumor). I also feel like a hypochondriac and I am sure that anxiety is only making things much worse for me. Take care and I hope you find some answers soon!
Hi Mimi, welcome to the forum.
Welcome, mimi!! If the testing comes back negative, get tested for Lyme disease.
Hi Mimi,
Let me also welcome you to the SJS World and family! Please look around the board as you'll find so much information and a lot of great members as well.
Take care of yourself -
Patze
Patze, Joe, HeidiJo, Jazzlover,
Thanks for the warm welcome. I've been tested for Lyme, B12 and Calcium/Vitamin D deficiencies, with negative results. I've had more tests during the last 9 months than I have had in my entire life or could possibly list here, and nothing has shown up - yet. If the new neurologist can't figure me out, I'm moving on to a rheumatologist for more tests. The neurologist is conducting the immunoglobulin/ANA/Sjogrens tests, so I am hoping that she is on the right track. My endocrinologist is monitoring my thyroid closely, as I suddenly have multiple growths on the left side of my thyroid.
HeidiJo - I can relate. I've been healthy and active my entire life with no health issues, other than occasional GERD. Now it seems like my body is falling apart. For the past 9 months, my symptoms were more along the lines of neurological/rheumatological, and without the dry eyes/mouth. However, the dry eyes/mouth symptoms suddenly started last month, so you may still get those symptoms. My eyes are more problematic than my mouth, but I am definitely noticing the dry mouth the past few weeks. I'm using Biotene mouthwash and Systane eye drops/gel for now.
I am reading all of the posts on this forum so that I am fully informed about this disease. Although I'm not happy about the potential diagnosis, I will be relieved to find out what is causing my strange symptoms, so I can address them and move on with my life.
Mimi
Hi Mimi--
Welcome!
I hope things are figured out for your shortly.
I am one of those people who have nothing showing up on the blood tests, but continue to have symptoms. Keep us posted on how things go. I am glad you have a supportive neurologist! It is nice to hear we are not crazy!
Rachel F.
Hi Mimi :)
A belated welcome from me too.
I hope you find the answers you are looking for.
Take care - Scottie :)
I was diagnosed via bloodwork. My ANA, SS-A and SS-B were soooo high, there was not doubt.
I would definitely get tested for those and: Vitamin D, Sed Rate and Oh Gosh I can't remember all of them. ::)
Others here will think of the others.