1. < Autoimmune Diseases

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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Mentor
Becky, Volunteer Mentor | @becsbuddy | 5 days ago
In reply to @j77 "Thankyou! I am so sorry you and your daughter are going through this.I feel like I..." + (show)
@j77

Thankyou! I am so sorry you and your daughter are going through this.I feel like I am on the show Mystery Diagnosis just going from Doctor to Doctor with no answers.It is awful. I hope in time I or the Doctors can figure it out.I would just like for something really definite to show up in my Bloodwork at this point.

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@j77. You will probably have luck if you call one of these:
NORD. National Organization of Rare Diseases. https://rarediseases.org/

GARD Genetic and Rare Diseases. https://rarediseases.info.nih.gov/
Both organizations maintain a list of doctors who specialize in autoimmune disease. You may have to drive somewhere, but. . . . . .
Good Luck!!

REPLY
1 reply
j77 | @j77 | 5 days ago
In reply to @becsbuddy "@j77. You will probably have luck if you call one of these: NORD. National Organization of..." + (show)
@becsbuddy

@j77. You will probably have luck if you call one of these:
NORD. National Organization of Rare Diseases. https://rarediseases.org/

GARD Genetic and Rare Diseases. https://rarediseases.info.nih.gov/
Both organizations maintain a list of doctors who specialize in autoimmune disease. You may have to drive somewhere, but. . . . . .
Good Luck!!

Jump to this post

Thank you so much! I appreciate your help!

REPLY
artemis1886 | @artemis1886 | 5 days ago
In reply to @j77 "Thankyou so much! I have done so much research and I think this is what I..." + (show)
@j77

Thankyou so much! I have done so much research and I think this is what I have. Probably brought on by Covid. Have you tried IVIG or anything that has helped at all. I forget to mention in my post that I can feel hot, cold and touch on the outside of my torso, but my insides are numb. I am thinking that could possibly be small fiber neuropathy too. The Doctors look at me like I am making it up when I tell them that symptom. I am still trying to figure out how this happened to me.

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I am on IVIG not given right by the doctor. Every 3 months 5 times a day. When I took it previously every two weeks. The panzyga I take last only two weeks. Then I get dizziness, balance problems with my motor neuropathy my hands start shaking worse.

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1 reply
josmio | @josmio | 5 days ago

I agree that there are only a few doctors. Unfortunately, the doctors only recognize the symptom of dryness. Most don’t recognize the inflammatory systemic manifestations of Sjogren’s disease. The difficult part of this disease is that each one person may present symptoms that are different from another patient. It’s not diagnosed early to start the treatments and it’s not diagnosed properly. I’m still trying to find a doctor who can explain these changes I’m going through. It just seems that it is up to me to get the care and the answers I need because I’m not getting the help that should have been given by these healthcare providers.

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1 reply
mcmak444 | @mcmak444 | 4 days ago

I have had all the same symptoms. I was initially diagnosed with fibromyalgia, and now they are working me up for Sjogren’s.. It was my primary care doctor that told me that 20 to 40% people test negative for Sjogren’s despite having it.. I went back to the rheumatologist, and she agreed based on my symptoms, including parotid gland swelling, and all of the other symptoms of Sjogren’s. It’s been hard for me, but I’ve learned to advocate for myself. We know when there’s something wrong with our body and we must advocate. I’m also HBLA – 27 positive. Which is a gene that put you at great arrest for autoimmune disease diseases. I only found that out because I had Uveitis 3 times and my ophthalmologist told me to get tested for it. Hang in there, advocate for yourself…. Our healthcare system does not work well and unfortunately, they send you to multiple specialist who can’t seem to put the puzzle pieces together. ❤️

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1 reply
j77 | @j77 | 4 days ago
In reply to @mcmak444 "I have had all the same symptoms. I was initially diagnosed with fibromyalgia, and now they..." + (show)
@mcmak444

I have had all the same symptoms. I was initially diagnosed with fibromyalgia, and now they are working me up for Sjogren’s.. It was my primary care doctor that told me that 20 to 40% people test negative for Sjogren’s despite having it.. I went back to the rheumatologist, and she agreed based on my symptoms, including parotid gland swelling, and all of the other symptoms of Sjogren’s. It’s been hard for me, but I’ve learned to advocate for myself. We know when there’s something wrong with our body and we must advocate. I’m also HBLA – 27 positive. Which is a gene that put you at great arrest for autoimmune disease diseases. I only found that out because I had Uveitis 3 times and my ophthalmologist told me to get tested for it. Hang in there, advocate for yourself…. Our healthcare system does not work well and unfortunately, they send you to multiple specialist who can’t seem to put the puzzle pieces together. ❤️

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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!

REPLY
1 reply
j77 | @j77 | 4 days ago
In reply to @josmio "I agree that there are only a few doctors. Unfortunately, the doctors only recognize the symptom..." + (show)
@josmio

I agree that there are only a few doctors. Unfortunately, the doctors only recognize the symptom of dryness. Most don’t recognize the inflammatory systemic manifestations of Sjogren’s disease. The difficult part of this disease is that each one person may present symptoms that are different from another patient. It’s not diagnosed early to start the treatments and it’s not diagnosed properly. I’m still trying to find a doctor who can explain these changes I’m going through. It just seems that it is up to me to get the care and the answers I need because I’m not getting the help that should have been given by these healthcare providers.

Jump to this post

I am sorry that you are going through this as welL It is so frustrating. I am praying for you!

REPLY
j77 | @j77 | 4 days ago
In reply to @artemis1886 "I am on IVIG not given right by the doctor. Every 3 months 5 times a..." + (show)
@artemis1886

I am on IVIG not given right by the doctor. Every 3 months 5 times a day. When I took it previously every two weeks. The panzyga I take last only two weeks. Then I get dizziness, balance problems with my motor neuropathy my hands start shaking worse.

Jump to this post

I am so sorry. I always hear good things about IVIG, but it seems like it is only a temporary fix.

REPLY
1 reply
artemis1886 | @artemis1886 | 2 days ago
In reply to @j77 "I am so sorry. I always hear good things about IVIG, but it seems like it..." + (show)
@j77

I am so sorry. I always hear good things about IVIG, but it seems like it is only a temporary fix.

Jump to this post

It works right if prescribed right. IVIG is given either every 2 to 4 weeks this doctor is prescribing it every three months. IVIG wears off after 25 days. I took it from age 10-18 it worked perfectly I took it every two weeks.

REPLY
1 reply
j77 | @j77 | 2 days ago
In reply to @artemis1886 "It works right if prescribed right. IVIG is given either every 2 to 4 weeks this..." + (show)
@artemis1886

It works right if prescribed right. IVIG is given either every 2 to 4 weeks this doctor is prescribing it every three months. IVIG wears off after 25 days. I took it from age 10-18 it worked perfectly I took it every two weeks.

Jump to this post

Oh! I did not realize it wore off so quickly. I am glad you mentioned that. That is frustrating your Doctor is only presribing it every three months. Is it an insurance thing? I spoke to my Prinary and he told me IVIG can be hard to get because it is so expensive. I might have already asked you this, but does IVIG help with hand weakness?

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