Sjogren’s Syndrome – Introduce yourself and meet others

Hi @rarelybees2889, as @johnbishop suggested I have moved your message to this existing discussion where you can meet other member who have Sjogrens Syndrome, like @lioness @tigerlilly @8j4p2r @peach414144 and @zenk to name a few.
Click VIEW & REPLY and you can read through past posts.

What weird and unusual Sjogrens do you have? Which are most challenging to deal with and how do you manage them?

Hi
I was diagnosed at Mayo six years ago. My first symptoms were dryness, as is common. I was sero negative, the bloodwork was not conclusive, so Mayo did a lip biopsy, the gold standard!, which was positive.
A month later, I had optic nueritis in the left eye, very unusual with Sjogrens. Over the years I've developed Renaulds, Sun Allergy, Severe Dry eyes and more than normal arthritis. A few months ago I ended up with Optic Nueritis AGAIN!
That was the point I decided to go to Mayo for care long term. After extensive testing, a spinal MRI, ect. it was decided the optic nueritis is autoimmune and related to Sjogrens. I have seen a nuerologist specializing in autoimmune issues and a rhemetologist who I see now every six months.
I am in three clinical studies at Mayo, two with autoimmune nuerology. We need more research and better treatments!

Hi bees, I have experienced muscle weakness over the last few months. I have sjogrens . I do not have any Rheum markers. Wonder if anyone here with Sjogrens has experienced muscle fatique or abnormal nerve conductions studies with their Sjogrens. Thanks Zenk

@rarelybees2889 — I've been in several heart studies at Mayo Clinic Rochester years ago that actually changed my medication for blood pressure based on a diagnosis change to hypertension. They do a great job in research. Last year I was in a flu shot study where they took some blood samples before and after giving you the flu shot and then I came two additional times to give a blood sample and vitals. I too would like to see a lot more autoimmune research studies (and the results!).

You might want to look into serum eye drops. You have to give yourself the blood but it is worth it. This helps a lot with my severe dry eyes. I also use medical contact lens and restatis.

Sorry to hear that.
Sjogren's is a big topic.
How were you diagnosed, as in what were the criteria, positive ANA, positive anti-Ro, salivary gland biopsy etc?
What treatment(s) have you been given, if any?
Do you have any commonly co-occurring autoimmune illnesses such as Hashimoto's Thyroiditis?

Overview might be of help:
http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275
Thanks

@rarelybees2889 Good morning. Can you tell us more about the serum eye drops? I’ve never heard of them!

Serum eye drops are using your own blood serum, which is similar to tears to support tears. You have to find a place that will do them (some Lion's Club eye centers) and have a prescription from your doctor. They take your blood, spin out the serum and give you small vials for your eyes. You have to keep them all frozen but one that you use for a limited period and then throw away. It seems like a complex system, but they really do help. Unfortunately the FDA hasn't gotten around to approving them, but most eye doctors support their use. If you have severe dry eyes, they help a lot. There is a company called Vital Tears that does them, although they are also researching also, so just be aware of that and ask to "opt out" if you don't want to be in the research. This company sees the commercial possibilities because serum eye drops are very popular. They don't produce tears, but are similar to what you tears should be (if your eyes don't make them) if you have SS or other issues.

As wrong as I may be I find it very difficult finding a doctor who will address the issue of Sjogrens. Would anyone know of the specialty doctor who will diagnose and work with this? Pretty bad here where I am. Peach