u/Prettygirl3321

HI everyone,

About 6 years ago, I went through almost a full year of what seemed like narcolepsy symptoms. Every time I went to the ER, the doctors would mention narcolepsy as a possibility (I never heard of it before).

The symptoms kind of went away for about 6 years, but then they came back about 6 months ago.

Can narcolepsy symptoms really come and go like that? Is it possible to have significant symptoms for a year, have them improve or disappear for several years, and then have them return?

Another thing that makes me wonder is my family.

Both of my parents have many symptoms that sound like narcolepsy. In my family, it has always seemed completely normal for people to fall asleep at the table, while talking, during a dental procedure, after drinking coffee or energy drinks, they just go from talking to snoring in a second and sometimes they will say funny things that don't make sense before falling asleep.

Could this just be some kind of familial tendency to be extremely sleepy, rather than actual narcolepsy? Or does this family history make narcolepsy more likely?

I'm having my sleep study next week, and I'm honestly super nervous about it. I would really appreciate hearing from anyone who has experienced something similar or has knowledge about narcolepsy and how symptoms can fluctuate.

HI everyone,

About 6 years ago, I went through almost a full year of what seemed like narcolepsy symptoms. Every time I went to the ER, the doctors would mention narcolepsy as a possibility (I never heard of it before).

The symptoms kind of went away for about 6 years, but then they came back about 6 months ago.

Can narcolepsy symptoms really come and go like that? Is it possible to have significant symptoms for a year, have them improve or disappear for several years, and then have them return?

Another thing that makes me wonder is my family.

Both of my parents have many symptoms that sound like narcolepsy. In my family, it has always seemed completely normal for people to fall asleep at the table, while talking, during a dental procedure, after drinking coffee or energy drinks, they just go from talking to snoring in a second and sometimes they will say funny things that don't make sense before falling asleep.

Could this just be some kind of familial tendency to be extremely sleepy, rather than actual narcolepsy? Or does this family history make narcolepsy more likely?

I'm having my sleep study next week, and I'm honestly super nervous about it. I would really appreciate hearing from anyone who has experienced something similar or has knowledge about narcolepsy and how symptoms can fluctuate.

Is this caused by Sjögren's?

What can I do about it? My mouth tastes like blood, my entire mouth is extremely sore and I keep accidentally biting the inside of my cheeks and tongue over and over again.

I'd like to learn more about clinical trials for new medications that are currently being studied. I'd also love to hear from anyone who has participated in a clinical trial—the pros, the cons, whether you'd recommend it, and who I should contact if I'm interested in enrolling.

I'm a 33-year-old woman with more than one autoimmune disease.

Thank you!

This is starting to feel ridiculous. Every few weeks I get another diagnosis, and I still have more tests coming up. I'm beginning to feel like every worst-case scenario is actually happening to me.

So far I've been diagnosed with **Hashimoto's**, **autonomic** **dysfunction**, and **Sjögren's**.

Today I tested positive for **RA**, and of course Google says that this particular RA antibody is associated with a more severe, progressive form of the RA.

I'm also being tested in the next few weeks for narcolepsy and small fiber neuropathy.

I'm 33 years old, not 100!!

If anyone has a few kind or encouraging words, I'd really appreciate them right now. I honestly don't know what to think anymore.

Most of the people in my life don't even know what to say to me anymore, so I'm all alone in this.

BTW I Also feel so sick, how am I supposed to deal with all this if I can't even sleep at night from all the pain?

I can't sleep because of nerve and joint pain. I also got a cut in my * from dryness.

I used to hold ice in my hand to distract myself from the pain but these days I'm cold all the time so ice isn't soothing anymore. any ideas of how to distract my pain other than ice so I can sleep?

btw I'm 33, just got diagnosed and didn't start medication yet.

starting on Thursday.

Did hydroxychloroquine make your Sjögren’s symptoms milder?

To everyone who responded to my previous post saying their Sjögren's is mild—I have a question.

I'm trying to understand what I can realistically hope for because right now I'm really not okay. I have so many symptoms, and they're affecting every part of my life and almost every part of my body, I feel like this is pure torture.

When you say your Sjögren's is mild, do you mean it has always been that way, or did it improve with medication?

Since my appointment yesterday with my rheumatologist, I haven't been able to stop crying. She told me that hydroxychloroquine may take 6–9 months to start working. I honestly can't imagine living like this for another 6–9 months.

For those who have improved, did your symptoms become much milder after treatment? Is it possible to go from feeling this sick to having only mild symptoms?

I'd really appreciate hearing your experiences.

I want to understand something. When I Google Sjögren's, it sounds like a relatively mild condition that mainly causes dry eyes and dry mouth.

However, when I watch YouTube videos or read about other people's experiences, they're describing nearly every one of my many debilitating symptoms—neurological issues, autonomic symptoms, and much more.

I haven't started any treatment yet. My rheumatologist is calling me this week because my test results came back positive for Sjögren's.

My question is: Is Sjögren's generally considered a mild condition? Once I start the right treatment, is it realistic to expect to live a normal life again?

I'd really appreciate hearing from people with firsthand experience.

Blood result:

Early Sjogren's Syndrome:

Salivary Protein 1 Ab Result 01:

Abnormal

Positive

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I have my rheumatologist appointment in a month and would like to know if I for sure have Sjogrens.

​

Symptoms: Autonamic dysfunction+ years of having dry mouth and eyes and lots of more symptoms.

​

Thank you!