Where should I go from here?

Morning everyone!!

Still waiting to hear whether I have been accepted as a new patient with the Rheumy in Jonesboro Ar or not. And in the mean time I keep having problems. I am having A LOT of problems with lightheaded-ness & vertigo lately. So much so that I recently lost my balance in wal-mart & almost fell into the open dairy case!! Luckily my son was with me & reached out & grabbed me!

Out of a 7 day week, I’d say that I am affected 5 out of 7 days. Several times a day. It’s not just a spell here or there…it’s numerous times a day and sometimes they get really bad!

I have also been having intimate issues lately. Not every time, but when I do have problems…I have sensation issues. I just can’t feel anything. Sorry if this is TMI, but I am getting very concerned.

I have a ton of relapsing/remitting symptoms but these are the very concerning to me. And the newest. I am thinking SFN??? Also MS has crossed my mind??? I just don’t know!!!

Trying to get an appt with my PCP to hopefully get the ball rolling in some kind of direction. I am starting to get stressed, which is not helping matters any!!

Thoughts anyone???


Hi Limarie! I certainly wouldn’t hesitate to ask for a neurology referral. You may also want to ask about a cardiology consult, just to rule out any heart issues contributing to the light-headedness. For some of these issues you would address symptoms directly, but you may also want to talk about systemic treatments. There are some systemic treatments used to treat Sjogren’s.

I am hoping for a neuro referral. But the only neuro in town…I honestly don’t like him. I saw him back in 2005 when I suddenly started having Grand Mal seizures and TBH…he needed to retire back then! I can only imagine how he treats his patients today.

I had a full cardiology work up back in Sept of last year…was told I had the heart of an 18 year old. I also wear a Fitbit HR and when I have an episode I always check my heart rate and it’s always normal. I have also checked my BP during and after an episode and while it’s slightly elevated (to be expected) it’s never anything alarming.

I will look into systemic treatments for SJS. But will have to wait until I hear from my potential new Rheumy (if I ever do) or make the decision to go back to my original Rheumy (my hubby suggested that we confront him…in a nice way, and tell him all of our concerns & fears and HOPE he changes ) because my PCP has already told me she knows nothing about treating SJS.

Thanks so much for your reply!!
Enjoy your evening!