1. < Autoimmune Diseases

Would like to hear from people with Sjogrens

Posted by Meredith0903 @meredith0903, Apr 12, 2012

I was diagnosed with Sjogrens at age 23. I am now 38 and my main symptoms (aside from the dry eyes and mouth), were fatigue and numbness. Lately I have been getting concerned about cognitive problems. I seem to be more forgetful, have trouble concentrating, trouble with numbers, and coming up with solutions to problems. I feel like it is starting to affect my job and I can't afford not to work. I have been blaming it on my constant fatigue, but now am not so sure. I would love to hear from anyone who has similar symptoms! Thank you.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Mentor
Becky, Volunteer Mentor | @becsbuddy | Oct 28, 2023
In reply to @cblue "I’m newly diagnosed with Sjogrens, would like to meet people, communicate, if possible with patients in..." + (show)
@cblue

I’m newly diagnosed with Sjogrens, would like to meet people, communicate, if possible with patients in NYC metro area. Think I need a rheumatologist with more expertise in this, nuch sicker than expected. Saliva med not working consistently, think, nut not sure small nerve fiber(‘ involvement. Severe joint pain, coughing,, with gobs phlegm & dry hacking , vasculitis, eyes pain, visual issues ( but will see eye doc soon.… more.. my doc was great , but used it out after a year of blood work failed to diagnose. Bad flare, lip biopsy diagnosed. Was given informational leads by someone in this site, but If you live vaguely in nyc area, would like suggestions for rheumatologist familiar with Sjogrens as a systemic not just minor dry mouth, dry eyes disease. Don’t remember rules of this group either post to me here or by private message.

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Hello again, @cblue ! A good way to find a doctor is to check out these two websites:
GARD https://rarediseases.info.nih.gov/. This one if for genetic and rare diseases. They also keep a list of doctors
https://rarediseases.org/ This is the rare disease organization. Their website is great.

You might also be interested in this newsletter. https://www.sjogrensadvocate.com/. You have lots of work to do, but be sure to write down your questions!
And, yes, the moderator will remove your email.
I’m sure you will meet other members. Will you stay in touch and let me know what you learn?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 28, 2023
In reply to @cblue "I’m newly diagnosed with Sjogrens, would like to meet people, communicate, if possible with patients in..." + (show)
@cblue

I’m newly diagnosed with Sjogrens, would like to meet people, communicate, if possible with patients in NYC metro area. Think I need a rheumatologist with more expertise in this, nuch sicker than expected. Saliva med not working consistently, think, nut not sure small nerve fiber(‘ involvement. Severe joint pain, coughing,, with gobs phlegm & dry hacking , vasculitis, eyes pain, visual issues ( but will see eye doc soon.… more.. my doc was great , but used it out after a year of blood work failed to diagnose. Bad flare, lip biopsy diagnosed. Was given informational leads by someone in this site, but If you live vaguely in nyc area, would like suggestions for rheumatologist familiar with Sjogrens as a systemic not just minor dry mouth, dry eyes disease. Don’t remember rules of this group either post to me here or by private message.

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@cblue, Mayo Clinic Connect is a public forum and it is not recommended to post a personal email address publicly. Please use the Private Message function. It is secure. Learn how in the Help Center https://connect.mayoclinic.org/help-center/

I might also add that by sharing here in the forum, you are connecting with several people where all can benefit from group support.

REPLY
buddabu | @buddabu | Nov 4, 2023

Are you taking Gabapentin? I was put on that and 2 weeks into it, I handed my car keys to my husband and said " I am not driving anymore." I had gotten into the car and did not remember where I was going. I had noticed days before that I was driving and would have no memory of where I had been. Finally the doctor switched me to Lyrica and my memory returned. The cost of Lyrica even with our ins. was hard. Now I take Pregabalin and it is cheaper and doesn't cause the memory problems.

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1 reply
cblue | @cblue | Nov 14, 2023
In reply to @buddabu "Are you taking Gabapentin? I was put on that and 2 weeks into it, I handed..." + (show)
@buddabu

Are you taking Gabapentin? I was put on that and 2 weeks into it, I handed my car keys to my husband and said " I am not driving anymore." I had gotten into the car and did not remember where I was going. I had noticed days before that I was driving and would have no memory of where I had been. Finally the doctor switched me to Lyrica and my memory returned. The cost of Lyrica even with our ins. was hard. Now I take Pregabalin and it is cheaper and doesn't cause the memory problems.

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This was an old post. I haven’t yet spoken to my Rheumatologist about my likely neuropathy in my left foot. neurologist, who was Gray in person, but gave me no reports. Ultimately said try gabapentin but I’m not sure if it will help. Is anybody else taking gabapentin for neuropathy? I’ll talk to my rheumatologist, but I think while relying on googling something is accurate the medication I’m for sjogrens limited ability. I too, would be interested in hearing from people who are taking gabapentin for neuropathy or neuropathic pain
Poster and/or reach out to me privately.

REPLY
1 reply
cblue | @cblue | Nov 14, 2023
In reply to @cblue "This was an old post. I haven’t yet spoken to my Rheumatologist about my likely neuropathy..." + (show)
@cblue

This was an old post. I haven’t yet spoken to my Rheumatologist about my likely neuropathy in my left foot. neurologist, who was Gray in person, but gave me no reports. Ultimately said try gabapentin but I’m not sure if it will help. Is anybody else taking gabapentin for neuropathy? I’ll talk to my rheumatologist, but I think while relying on googling something is accurate the medication I’m for sjogrens limited ability. I too, would be interested in hearing from people who are taking gabapentin for neuropathy or neuropathic pain
Poster and/or reach out to me privately.

Jump to this post

Sorry, I use voice activation to make my post and there were a lot of errors. Short version of the question online which may not be accurate. It seems like gabapentin may not work with the medication I’m taking for Sjogrens I don’t need a hug or anything thanks I’m just wondering if anybody is taking gabapentin with Sjogrens -If so, does it help? I took it prior to diagnosis and symptoms when I first developed Morton’s neuroma from running. it was very helpful, but if I took it in the morning, it made me woozy so again anybody who has a an experience with gabapentin and my disorder I’d be interested in hearing from him specifically. if no one sees this, I’m fine with that. I’ll figure it out with my Rheumatologist hopefully(?)

REPLY
1 reply
cblue | @cblue | Nov 14, 2023
In reply to @cblue "Sorry, I use voice activation to make my post and there were a lot of errors...." + (show)
@cblue

Sorry, I use voice activation to make my post and there were a lot of errors. Short version of the question online which may not be accurate. It seems like gabapentin may not work with the medication I’m taking for Sjogrens I don’t need a hug or anything thanks I’m just wondering if anybody is taking gabapentin with Sjogrens -If so, does it help? I took it prior to diagnosis and symptoms when I first developed Morton’s neuroma from running. it was very helpful, but if I took it in the morning, it made me woozy so again anybody who has a an experience with gabapentin and my disorder I’d be interested in hearing from him specifically. if no one sees this, I’m fine with that. I’ll figure it out with my Rheumatologist hopefully(?)

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Excuse all corrects above

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