not diagnosed yet, but wonder if other have had this?

[PEEKABOO]

i have been diagnosed with primary sjogrens. the dr. is watching me for lupus, but i get this dizziness/off balance seems like constant anymore, last week i had a dizzy spell while talking with someone & again it happend yesterday, usually seems to happen when im standing in one place for any length of time, then this morning i took my dog to the vet, and while i was driving i get this really strange feeling like im just "out of it" and sometimes i will get pins & needles feeling in my legs and i feel very unsafe while driving. i do take meclalzine (sp?) for the dizziness, but this seems like its been happening more & more, i go back to my rheumy at the end of may. does anyone else have these problems?? it really gets discouraging because there is so much i would love to do, shopping, gardening and so on but i just dont feel comfortable going out alone or driving afraid i will get a spell, if i had 1 wish it would be to get my life back the way it was before all this started as im sure everyone else feels the same i would just like to live as normal of a life as i can instead of feeling like a prisoner in my own home.
thanks,
peekaboo

[Maia]

It could be a variety of things, from some kind of siezure, to inner ear problems, to some kind of neuropathy, to an anxiety attack (they can come out of the blue for no apparent reason). I have had pins-n-needles in my legs & arms, and parts of my face, and really have no explanation for it. For me, it tended to last weeks if not months before it would go away.

I don't tend to get dizzy though or the other feeling you describe.

This is definitely worth mentioning to your doctor in May, and if it gets worse you may want to try your GP again.

[Lily]

Hi Peekaboo,

Its hard to speculate just what this is from, I have had some similar problems at times and you will probably find others on here too that can identify but they may not all be from the same cause.

Sjogrens and Lupus can cause problems that could result in these symptoms, so its important to tell your Rheumy about it in May, perhaps your GP in the meantime so he can check out some of the more obvious things and get them out of the way before your Rheumy appt.

Sjogrens comes with a lot of peripheral and even central nervous disturbances in some patients and so can Lupus. Here's some more information:

http://www.sjogrensworld.org/articles.htm

love
Lily

[manda31]

Like the others said....it could be various things...but I too get a lot of dizziness. I've never given it much thought though. I have to be careful when I'm walking actually because if I don't stay focused on my path - say I try to walk and turn my head to look at something - I get vary dizzy and wobbly.

I assume for me its an inner ear thing, but with my life revolving around doctors for the last 15 years I get tired of bring up new problems with the GP.

Hope you get it sorted out and be careful on the roads!

Amanda

[halfpintfl]

Hi hon, the only thing that I can add is, for you to call your Rheumy's nurse a.s.a.p. tell herwhat your problem is and ask her to write it down as you say it, and please give it to your dr. Then if it is super important, he will have you come in earlier, if not, then you can put your mind to rest til May. That's what I do, and it relieves a lot of fear,and the nurses are there to do it. luck, and let us know.

[Mootie]

Hi Peekaboo,

I posted this problem here a few weeks back. I told my Dr I get dizzy if standing in the one spot and feel like I am going to pass out. He checked my BP and it is on the low side but until I get another episode we are assuming that it is low BP. About the same time my ENT discovered a polyp in my ear I have a lot of fluid in my sinus and ears so it could be that.

It is a very concerning symptom and I hope we find out what it is.



Mootie