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Sjogren's Question

Posted by j77 @j77, Mar 3 3:22pm

Does anyone have Small Fiber Neuropathy with Sjogren's? Also trouble walking? I have been ill for the last few years with no answers. I had anemia for years from severe periods and had a one time strong iron infusion and had a reaction days later and have never been the same.I was also at the Beach around the same time a few years ago and believe I possibly picked up covid too.I believe I am dealing with possibly Sjogren's or something similar with Long Covid as well. I have squinty dry eyes with blurry vision and permanent floaters that can't be in the sun. Dry mouth with trouble swallowing, sinuses, hair and skin. I do have trouble eating foods like bread or thicker foods where I can choke sometimes. I have weak ankles, feet, hands, wrists and fingers. I have the numbness, but trouble flipping a light switch on a lamp off.,I have a weak torso especially diaphram and pelvis and big belly.I have big inflamed upper arms and legs. When I sit in a bath my belly pushes up into my Diaphram and my arms are pushed forward.I need help getting out of the bath and have to use my arms to get up from a seated position. I can lift my arms, but they get very tired easily. It would be too much to dry my hair because I just don't have the upper arm strength to do it
I remember I had weak upper arms before being diagnosed wih thyroid disease years ago too. I have trouble walking because I just don't have the core strength. My arms and legs are strong, but weak at the same time.I think it confuses the Doctors becayse of that.I have had so many tests, but they have not found much.It is not MS, Muscular Dystrophy, Myasthenia Gravis, ALS, etc. I have had a few positive ANA's with a low high speckled pattern, but the Rhuematologists have dismissed Autoimmune bring involved. I have had thyroid disease for a long time. Since this all came on I have high glucose, but not diabetes. There is alot of Lupus, Thyroid and one case of Sjogren's in my Family. I am just wondering if anyone has NeuroSjogren's or has experienced any of these symptoms. I am thinking the years of anemia, thyroid disease, stressful job, too much exercise and than possibly covid set this off. I did have the ER check for Epstein Barr at the beginning of this and my titters were sky high. The same thing happened before I was diagnosed with Thyroid Disease so I know there must be some kind of connection.

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giova | @giova | 2 days ago

Hello, Yes I do have Sjogren and it Toik a while to be able to have the diagnosis. Finally I had the salival glands biopsia and confirmed Sjogren. I do have dry eyes and mouth, but my worse problem is in both feet and the cause is vascular neuropathy. I take Pregabalin morning and night plus Duloxetin at lunch and it is helping a lot.

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Becky, Volunteer Mentor | @becsbuddy | 2 days ago
In reply to @j77 "I am so sorry you are going through the same thing. Fibromyalgia was brought up by..." + (show)
@j77

I am so sorry you are going through the same thing. Fibromyalgia was brought up by one Rhuematologist. I think covid brought on every underlying Autoimmune and virus in my body. It is so scary because of the walking issues and weakness all over. My hands are extremely weak now. I am trying to advocate for myself and just going from Doctor to Doctor. It is like you have to figure it out yourself. Thankyou for the Great Information! I am praying for you!

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@j77 you can try for doctors at these organizations:
NORD. National Organization for Rare Diseases: https://rarediseases.org/. Or……
https://autoimmune.org/resource-center/finding-a-physician/. Or. . . . .
GARD Genetic and Rare Disease Organization: https://rarediseases.info.nih.gov/

These 3 groups have information about the different autoimmune diseases AND lists of doctors Who have specialized in treating these diseases.
Will you tell me about your phone calls?

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1 reply
j77 | @j77 | 2 days ago
In reply to @becsbuddy "@j77 you can try for doctors at these organizations: NORD. National Organization for Rare Diseases: https://rarediseases.org/...." + (show)
@becsbuddy

@j77 you can try for doctors at these organizations:
NORD. National Organization for Rare Diseases: https://rarediseases.org/. Or……
https://autoimmune.org/resource-center/finding-a-physician/. Or. . . . .
GARD Genetic and Rare Disease Organization: https://rarediseases.info.nih.gov/

These 3 groups have information about the different autoimmune diseases AND lists of doctors Who have specialized in treating these diseases.
Will you tell me about your phone calls?

Jump to this post

Thankyou so much! I will definitely try these places and let you know what happens. My Doctor was trying to get me into NIH for a suspected Autoimmune and NIH would only take me if I was officially diagnosed so this has been a tough road.

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j77 | @j77 | 2 days ago
In reply to @giova "Hello, Yes I do have Sjogren and it Toik a while to be able to have..." + (show)
@giova

Hello, Yes I do have Sjogren and it Toik a while to be able to have the diagnosis. Finally I had the salival glands biopsia and confirmed Sjogren. I do have dry eyes and mouth, but my worse problem is in both feet and the cause is vascular neuropathy. I take Pregabalin morning and night plus Duloxetin at lunch and it is helping a lot.

Jump to this post

Thankyou so much for replying! My feet and hands are horrible. Numbness, tingling and weakness. I feel like it is almost unbearable first thing in the morning and night. I can barely brush my teeth or brush my hair. I also have the internal numbness in my torso which is so scary.I can feel hot, cold and touch on the outside, but it is just internal numbness. I noticed that since all of this came on I am prediabetic now so I wonder if that is from Autoimmune too.I have been getting internal tremors at night as soon as I am relaxed and about to go to sleep. I have huge upper arms,legs and belly. It as if my metabolism complete stopped and my body can't make muscle anymore. I am still trying to figure out how this happened to me.

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lisamann | @lisamann | 2 days ago

I joke about "collecting autoimmune diseases" and my first one was primary Sjogren's. I was pooh-poohed by doctors for years but was finally taken seriously after I developed RA many years later.

I am seronegative for RA however I got a clinical diagnosis and I'm getting treatment. Autoimmune disease is rampant in my family.

Many people, including my family, start out with one disease and end up with a few more, sadly.

I hope you finally get the answers you need.

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1 reply
j77 | @j77 | 2 days ago
In reply to @lisamann "I joke about "collecting autoimmune diseases" and my first one was primary Sjogren's. I was pooh-poohed..." + (show)
@lisamann

I joke about "collecting autoimmune diseases" and my first one was primary Sjogren's. I was pooh-poohed by doctors for years but was finally taken seriously after I developed RA many years later.

I am seronegative for RA however I got a clinical diagnosis and I'm getting treatment. Autoimmune disease is rampant in my family.

Many people, including my family, start out with one disease and end up with a few more, sadly.

I hope you finally get the answers you need.

Jump to this post

Thankyou for responding! My first one was thyroid disease many years ago. I remember the Best Rhuematologists in our area told me it was just chronic fatigue. I know chronic fatigue is a real thing, but I told him that is not what I had it was something else.Thankfully a local woman doctor knew right away it was thyroid disease and prescribed me a low dose of synthroid amd I was better shortly after. This is the same thing though.The Rhuematologists giving me the run around and it is really bad because I believe I have Long Covid on top of autoimmune so I have so many symptoms.All my Family that has autoimmune has at least three and I only thought I had one, but now I believe I have several now. I think I was always use to not feeling that great, but now things are so severe it is out of control. My way of always dealing with not feeling Great was exercising all of the time. I am in too bad of shape to do that now because or the muscle weakness and inflammation.I was doing alot of running and walking. I probably should have been doing yoga and plates instead.

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artemis1886 | @artemis1886 | 1 day ago

It is easy to get. You can contact the manufacturer and get get discounts. The doctor does not know how to prescribe it properly. My rheumatologist is prescribing it. He is using five of us a Guinea pigs.. Mine is autoimmune severe axonal sensorimotor peripheral polyneuropathy, SFN, dysautonomia and cardiac autonomic neuropathy.

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1 reply
j77 | @j77 | 1 day ago
In reply to @artemis1886 "It is easy to get. You can contact the manufacturer and get get discounts. The doctor..." + (show)
@artemis1886

It is easy to get. You can contact the manufacturer and get get discounts. The doctor does not know how to prescribe it properly. My rheumatologist is prescribing it. He is using five of us a Guinea pigs.. Mine is autoimmune severe axonal sensorimotor peripheral polyneuropathy, SFN, dysautonomia and cardiac autonomic neuropathy.

Jump to this post

Oh o.k. Thanks for letting me know!

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