Sjogrens

Posted by cmtg @cmtg, Aug 20, 2016

I have been diagnosed with this and I’m in pain most days and would like to have discussions.

@tigerlilly

Ask your dentist and look up Mayo Clinic. Saliva keeps you mouth clear of bacteria and cavities.

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@tigerlily never heard of saliva where do you get it?

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@rarelybees2889

Hi
Anyone here have Sjogrens Syndrome? I have had some pretty weird and unusual (for SS) complications. Love to interact with others who have autoimmune diseases. I also have Hashimotos,

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Hello @rarelybees2889 — Welcome to Connect. There is another active discussion on Sjogrens where your post will receive more visibility and you can meet other members discussing Sjorgrens. I'm tagging our moderator @ethanmcconkey to see if we can move your discussion here:

> Groups > Autoimmune Diseases > Sjogrens
https://connect.mayoclinic.org/discussion/sjogrens/

You may also want to join the following discussion for Hashimotos:
> Groups > Autoimmune Diseases > Hashimoto's Thyroiditis and IVIG Treatment?
https://connect.mayoclinic.org/discussion/hashimotos-thyroiditis-and-ivig-treatment/

Are you able to share some of your symptoms and anything you have tried for treating the symptoms?

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@powerofpositive

Use glasses…the Jackie O type if your outside and it is breezy/windy…really helps cut down on the drying effects of the blowing air…also inside if near a air handeling unit. I have been using a honey based drop as the others also have scarey side affects longterm. So far so good. Helps to stay really hydrated. Drink lots of water and other fluids., down side is alot of bathroom visits, but I notice a big difference if I don’t. I am trying my best not to use DMARS and so far so good.
How severe is your Sjogrens? Some times it pays to slow down and not just react to a “diagnosis”. Now that you know what “it” is research on line, get a second opinion..investigate alternative remedies, the more we know the better choices we can make for ourselves. We are fortunate to have access to medications, but they often come at a price or create other health issues….as side effects. But make informed choices and good luck.

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@savant . I have horrible dry eyes . I was using drops 4-5 times a day then a new Systane came out its Systane Complete , It really is good I only use the drops 3 times a day . ALso a humidifier in hot weather helps Those are some more suggestions

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Hi
Anyone here have Sjogrens Syndrome? I have had some pretty weird and unusual (for SS) complications. Love to interact with others who have autoimmune diseases. I also have Hashimotos,

REPLY
@rarelybees2889

Hi
Anyone here have Sjogrens Syndrome? I have had some pretty weird and unusual (for SS) complications. Love to interact with others who have autoimmune diseases. I also have Hashimotos,

Jump to this post

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?

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@rarelybees2889

Hi
Anyone here have Sjogrens Syndrome? I have had some pretty weird and unusual (for SS) complications. Love to interact with others who have autoimmune diseases. I also have Hashimotos,

Jump to this post

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

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@savanti

hi, going out on a limb here, so work with me, ok. Having myself just gone through an emotional awakening a few years back and spending the last 10 years learning about how /i have left psychologists puzzled by my success.
So, here it is for you to run around in your head. What does the brain do when a person is out in the freezing cold? The brain has a back up plan for every possible situation that might shut it down, in other words its a survivor. Now the brain shuts off circulation to the limbs. Right?
I believe with all mind and body illnesses the brain is the one behind it all. Just imagine your brain getting a signal telling it, the eyes are never outside, so they fail to need to produce moisture, like they would if they were outside all the time.
Take Alzheimer for could it be the brain is realizing the person is using pictures to remember people, push one button on a phone and a call is made, and so much more, so the brain realizing it can be a little more effencient by shuting down part of the brain used for memory. don’t need memory working so hard when there are tools to use.
Thus, use the medication, but, don’t depend on entirely. spend more time outside or at a floral shop. find things to that will tell the brain need to work here, need moisture. Too the medication might work even better by being in places you normally be go. goodluck

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Are you referring to Renauld's? There is no way to prevent it.Its a vascular issue…

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@zenk

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

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Hi Zenk. I have more arthritis issues instead, also central nervous system issues. Last visit to Mayo the rhemotologist noted that I may have an inflammatory hand arthritis related with SS. I only had one nerve test. Also probably have some some small fiber nueropathy.
Nice to meet you!

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@johnbishop

Hello @rarelybees2889 — Welcome to Connect. There is another active discussion on Sjogrens where your post will receive more visibility and you can meet other members discussing Sjorgrens. I'm tagging our moderator @ethanmcconkey to see if we can move your discussion here:

> Groups > Autoimmune Diseases > Sjogrens
https://connect.mayoclinic.org/discussion/sjogrens/

You may also want to join the following discussion for Hashimotos:
> Groups > Autoimmune Diseases > Hashimoto's Thyroiditis and IVIG Treatment?
https://connect.mayoclinic.org/discussion/hashimotos-thyroiditis-and-ivig-treatment/

Are you able to share some of your symptoms and anything you have tried for treating the symptoms?

Jump to this post

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!

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@lioness

@savant . I have horrible dry eyes . I was using drops 4-5 times a day then a new Systane came out its Systane Complete , It really is good I only use the drops 3 times a day . ALso a humidifier in hot weather helps Those are some more suggestions

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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.

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@colleenyoung

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?

Jump to this post

Thank you!

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@rarelybees2889

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!

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@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!).

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@zenk

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

Jump to this post

I have had tremendous muscle weakness, but my tendons bother me most. I tested positive for severe small fiber neuropathy a few years ago in all 5 biopsy sites. Carbamazepine, Requip and Oxy help. I also developed some sort of clotting disorder and have had 2 PE’s and a form of Pulmonary Fibrosis. Really strange.

What are you taking?

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@johnbishop

@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!).

Jump to this post

Yes, you are right. There should be more research in these areas. I think this area changes over and again which to me gives a high reason for this research. I think it leads into all areas of arthritis and inflammatory diseases.

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@rarelybees2889

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.

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

Liked by lioness

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