Brain Scans & Sjogrens

Does Sjogrens Disease damage show up on brain scans? Just wondering?

Hi sueg. I'm really glad you asked this question 'cause I've been having more CNS (central nervous system) problems lately. So, I did some research and found that Sjogren's damage does show up on some brain scans. The 3 most useful and practical neurodiagnostic  studies in evaluating Sjogren's patients suspected of having active brain involvement are brain/spinal cord MRI, EEG, and CSF (spinal tap).

EEG (electroencephalogram) and MMER (multimodality evoked response testing) may be clinically useful in evaluating and following Sjogren's CNS patients.

Brain CT scans are relatively insensitive.

SPECT measures regional blood flow. Some Sjogren's patients can have normal MRIs and abnormal SPECT.

Cerebral angiography is used to establish a potential diagnosis of CNS vasculitis.

Well I certainly learned something and I hope it helps you too. Love, Butterflake

Sjogren's can cause nerve problems as well, I've had many emg's with nerve damage results and my neuro's all have come back to it being Sjogren's....So it might be possible for it to show up on mri's as of yet for me it has not shown up on my mri's. Sjogren's can cause nerve damage and effect the nerve's...

One more thing, sueg. My neurologist will occasionally get an updated MRI using the MS protocols. When my Spinal fluid temperature rises due to heat/humidity, or overheats from exercise or just vacuuming, I get a disconnect from brain to nerves and often fall or have balance issues, not related to vertigo. I drop like a rag doll. I often wear cooling devices, vests, iced neckwear, and avoid getting overheated. The body is unable to control the temperature of the CNS fluid. I was told this in 2011. There's not a lot of info on the CNS aspect.

Hello Butterflake,

It's nice to meet the forum moderator.

Gosh, I hope I remembered the name correctly in the moment since I logged in a minute ago. I'm not really a computer techie and I find even these very friendly forums a bit overwhelming.

I have purchased from QVC, a product called Cool Downz. They are neck scarves containing a gel that absorbs water and you tie them around the neck. I usually soak mine in ice water for longer-lasting coolness for the time suggested. If left to soak too long the gel starts breaking down. They can be used again and again and I find that if you let them dry out before using them again you get better results.

There's also a towel-like product called COOL-ADE, that I purchased, this past summer from Amazon, I think? You wet, wring and shake them to activate the cooling process.

There's some ice packs, that I've used years ago for an injury that needed a portable ice pack. You twist the pack which causes a chemical reaction for an instant ice pack (these are one-time, disposable items). I will be looking for them, probably from a first aid supplier so that I can keep some in my car or during major power outages when ice is at a premium. They'd be useful if stuck in a leg of panty-hose and tied around the neck. May not be pretty, but adapting is crucial.

I worry that I'll be stuck in a traffic jam on my treks up north and may not be able to use my AC. I don't think I can survive for very long in an environment that's not climate controlled. When I start getting overheated, my first signs are agitation followed by muscle weakness and at its worst, brain to muscle function disconnect. Sweating has been such an intolerable burden. I don't know anyone who wears ice packs around their necks when shoveling or snow-plowing in sub-zero temps - but that's me!

I've seen ice vests used on some NatGeo or Discovery programs, it was a couple of months ago, for cooling down people with obvious signs of heatstroke. I'm going to check the emergency suppliers for this item, too.

One of the unusual side affects, which may just be peculiar with my particular blood make-up or genetics, is that I do not get arthritis. In 2004 I broke all the bones in my ankle and in 2010 I broke my left wrist. I have no signs of calcification or arthritis. I feel lucky with that aspect although breaking bones is still not a pleasant experience.

Muscle spasms are frequent and strikes muscles that I just can't comprehend being affected, and are like bolts out of the blue. They usually bring me to an abrupt halt regardless of where I am or what I'm doing -- having dinner, walking the dog or shopping. It's a problem that impacts my independence - just like high temp/high humidity days.

I'm going to continue my search for other cool-ade products and start keeping a cooler with ice when traveling in the summer to keep these items extra cold for longer periods, as well as plenty of ice water to cool myself down internally as well.

I wish you well and hope you can find the items. As I learn more from my neurologist on other ways to cope with the sweating, which has escalated over the years in severity, I'll pass on the info. It seems though, that with the CNS aspect, my body, at least, cannot control the temp of my spinal fluid.

Take care.

Hi KashaW. This info you gave is so helpful that I printed the thread. I'll definitely be buying some of these products. Once in a great while I boycott the mega retail giant Amazon, but that's rare. I've found some good sicca products in their health and beauty section, but I'll surely Google the products you mentioned. Thank you so much for this info! Love, Butterflake