Lupus?

[Susan330]

Hey everyone,
I’m new to this site, but was wondering if any of you also have a diagnosis of Lupus? At this point, I have been diagnosed based on skin biopsy of Acute Subcutaneous Lupus.. My rheumatologist cannot conclude that I have Systemic at this time although I do meet criteria… It has only been a few months since being diagnosed so it is all very new at this point.
However, about 5 years ago my neurologist told me that he believed I had Dysautonomia and I had a positive Tilt Table test as well as 90% of symptoms of Dysautonomia, but I haven’t gotten very far with it because doctors here do not understand it at all. I do have Florinef to take as needed when my blood pressure drops very low, but other than that I haven’t found treatment. I am looking into getting into Vanderbilt for further testing since they have a specialty center there for Dysautonomia.
My rheumatologist thinks my symptoms are more like Dysautonomia than Systemic Lupus and therefore is holding off any further treatment for SLE.
I’m not sure where to go from here besides to press my doctors to get me into Vanderbilt.
Anyone have any experience with this?
Thanks so much!
Susan

[Dr. Diana]

Hi Susan, Although I don’t have Lupus, I know many of us do. In fact, we can often exhibit numerous other autoimmune disorders — M.S., psoriasis, RA, etc. Even more of us are sort of “borderline” or we go back and forth in presentation, frustrating our doctors so much! It IS possible to have both dysautonomia and lupus. And the diagnosis for lupus is a bit wishy-washy. If you have any doubts about dysautonomia while you wait for Vanderbilt (or SOMEONE to help you, you can try a “poor man’s tilt table test” at home. Have you tried that? Thanks, Susan!

[Susan330]

Dr. Diana,
I have had a positive tilt table in the past. My BP dropped to 52/30 but I was still conscious. I always lose my vision and my hearing but I’m still able to feel my surroundings and talk a little. But, I do not remember if I had trouble with my heart rate on the tilt table. My heart rate stays about 140-150’s with minimal exertion. I also have SVT and my HR will jump up to 260. I have 90% of the symptoms of Dysautonomia, but I can’t find any of my specialists to really help treat any of it. (I see rheumatology, neurology, cardiology, electrophysiology, nephrology, urology, gastroenterology, internal medicine, and allergy specialist). They always suggest beta blockers that I cannot tolerate. I see that you speak a lot of Diamox. Does it treat the dysautonomia directly? I don’t really understand how it works.
Thanks so much.
Susan

[Dr. Diana]

Hi Susan330, Many of us end up with a form of hydrocephalus — that is what the Diamox is for. If you have symptoms such as the feeling of pressure in your head, getting motion sick easily, dizziness, mild nausea, sensitivity to sound, light and/or movement, or the headache at the base of your skull that radiates down your neck to the tops of your shoulders, you may be dealing with some hydrocephalus.

[Susan330]

I do have those symptoms… Is there any test that I would need to do? MRI, maybe? Or do they usually base it off of symptoms?
Thanks 🙂
Susan

[Dr. Diana]

I do have those symptoms… Is there any test that I would need to do? MRI, maybe? Or do they usually base it off of symptoms?
Thanks 🙂
Susan

Great question! I’m working now to get this in journals. It’s not new, though, just forgotten! I can see this on an MRI, and certainly via symptoms. Sometimes we can see it in the eyes, but doctors often forget about external communicating hydrocephalus. One author has coined it “IIHWOP” – Idiopathic Intracrania Hypertension without Papilledema”. I’ve found it to be highly prevalent in our population.

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