Article: Unusual symptoms, SS dx

[sunflower]

Hello SS friends,

I haven't posted in a long time but I continue with my array of symptoms without a diagnosis. 

I ran across this Medscape article this morning and it is so unusual I thought I would post it.  (Registration may be needed?)  The purpose of it is to describe a patient's symptoms and for doctors to select a diagnosis (so it's quite academic).  The patient has odd symptoms but ends up with a Sjogren's diagnosis.  To me, it's further proof of how obscure a diagnosis can be.

https://reference.medscape.com/viewarticle/824288?src=wnl_tp10n_190110_mscpedit&uac=223218FV&impID=1855584&faf=1

Best New Year's wishes to you courageous Sjogren's sojourners,
Sunflower

[SjoGirl]

Thanks for sharing. The NY Times had an article in this Monday's edition about a network or group which has grown up which attempts to find a diagnosis when one has not been forthcoming. I would share more information but we sent the papers out for recycling today.

[Carolina]

Thanks sunflower,

I remember reading somewhere that fairly often Sjogren's Syndrome presents FIRST with neurological symptoms, and no SICCA symptoms.

SjoGirl, here's your link to the NYT article:

When the Illness Is a Mystery, Patients Turn to These Detectives

https://www.nytimes.com/2019/01/07/health/patients-medical-mysteries.html

Regards, Elaine (aka Carolina)

[sunflower]

Thank you for your replies.  It's good to know there are people who aren't afraid of disease mysteries and will go to the wall to solve them.

In case anyone had trouble getting into the article, here's more about the symptoms.  "A 34-year-old woman presents to the emergency department with a 10-day history of weakness of the bilateral lower extremities, as well as urinary retention and constipation. She also complains of vomiting and dysphagia with liquids, along with drooling and nasal regurgitation for 3 weeks."

Presenting first with neurological symptoms would add to the mysteries of SJS and complicate a diagnosis.  Sigh...

Sunflower

[Deb 27]

I saw that article and had no idea it would end up being Sjogrens!!! Couldn't recognize my own disease but I surely didn't present like that.

[irish]

One can have many different symptoms with Sjogrens. I would bet that dry mouth, dry eyes are not found in all people for a primary diagnosis. I had gastrointestinal symptoms early on which don't make a person thing there is anything big going on. Then I had teeth problems with infection, extractions, abscesses, root canals, etc and many antibiotics and no dentist or doctor thought it was weird. The dry eyes came after 30 years of illness and about 2 months after diagnosis of Sjogrens. I have had more symptoms as time goes on and yet no cure for the sjogrens.

Most of us just have to take a deep breath and keep on going. Not fun but the best thing we can do for now. One of these days a cure will appear. Good luck. Irish