Paper about Neurological Involvement

[annette2]

Neurological involvement in primary Sj?gren syndrome: a focus on central nervous system.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3896357/

full article

Interesting

[Carolina]

OMG annette2, this is some scary results of the research.   

Because I have Primary Immune Deficiency, I do NOT have any of the blood work and markers for Sjogren's.

Instead, my basic immune system does the damage to my body, in ways I don't fully understand.

I do have Profound Peripheral Neuropathy and Small Fiber Neuropathy, both idiopathic and yet, to me, clearly connected to my Immune Dysfunction.

I wonder if my constant headache is related as well?  I just assumed it had to do with my severe degenerative disc disease in my neck.

You know, it has to be discouraging to read about these deficits and conditions related to Sjogren's Syndrome, and know that there is simply no treatment, or even relief of the symptoms available.

At least not that I know of.  Does anyone else know more?

I know there is always some 'relief' in confirmation of a problem....but this research was really very scary to me.

Hugs,  Elaine

[Head2Toe]

Many thanks for posting this annette2!  I am seronegative but still found the article to be disconcerting because in many ways I felt like I was reading my own medical history  

The current limitations on diagnosis are SO frustrating because the delay has impacts on so many of us.  While I am not currently experiencing a flare - there is no question in my mind that my body is being damaged over time - and my awareness of that decline in my health is causing me to be increasingly angry at the lack of responsiveness from within the medical community.  Today I am healthy enough to work and make a financial contribution to society - but if the decline continues at the current rate, will I have to retire early or go on medical leave in the next few years?  Will I be forced to leave the job I love?  Perhaps I will because sometimes life gets in the way of plans, but if it's preventable - for goodness sake let's do something sooner rather than later 

[annette2]

They choose the patients with pSS because they were referred to the Neuro-Immunology Center, which guaranteed the researchers interesting symptoms. The patients went through a great deal of testing too, didn't they?
I don't think we even have a center that would look at Neuro-Immunlogy here.
On the  plus side they are at least looking at these symptoms and acknowledging their presence. Maybe we'll start to see more research in this area. This paper stuck out from the rest because of the topic.

I also fund a symptom in there that I have but that no one had ever named or acknowledged "cutaneous tactile allodynia" - I'm going to put it in discussions to see if I'm alone with that symptom.

[Carolina]

cutaneous tactile allodynia

I Googled this and got lots of scientific papers, Annette2.

I know I have it, and get blamed for being sensitive.  Weird, eh?

Hugs, Elaine

[genko_b]

Thanks so much for posting this - very helpful. I'm taking it to my neurologist at our next appointment.

Genko