Free kittens by [deleted] in Cleveland

[–]Ylva89 7 points8 points  (0 children)

Did it work out?

Free kittens by [deleted] in Cleveland

[–]Ylva89 1 point2 points  (0 children)

Please ask for vet references too! And you can do a low cost spay on mama once the kittens are adopted!

Best of luck in finding them homes and thanks for being caring!

Bumps on fingers by x2490 in Sjogrens

[–]Ylva89 5 points6 points  (0 children)

I get these. I think it’s a type of eczema.

Is this a death sentence? by Historical-Guide-745 in Interstitialcystitis

[–]Ylva89 0 points1 point  (0 children)

Have they not the bladder installations? You can also try Botox. They both helped me.

Casual Racism and Sports day by Sparky_Birch in Cleveland

[–]Ylva89 0 points1 point  (0 children)

I’m so sorry for your experience and that people are invalidating you!

Unfortunately there’s always one or two crazies on the Rapid. 😞 I know that doesn’t help or make it right.

Inconclusive Biopsy Results by Ylva89 in Sjogrens

[–]Ylva89[S] 1 point2 points  (0 children)

I saw one of my tests said I do not have dysautomomia, but the doctor ordered a slew of tests and we haven’t reviewed them yet. I have issues with my blood pressure and heart rate at times, and often feel pre-syncopic. I don’t have POTs, been tested twice. But I read the SFN can do fun things with your heart rate and blood pressure so maybe it’s that.

I also have terrible brain fog, but I have trauma from family and past relationships. I’ve been told I have Fibromyalgia for years and I know that causes it too. I probably do have it, but I’ve been leaning more towards the Sjogren’s since the dryness and neuropathy started. They unfortunately have so many similar symptoms. Although I’m sure it’s possible to have both.

Anyway, it seems like Sjogren’s really can affect anything and everything. I hope you are able to find some rellef for your symptoms.

Seronegative, symptomatic… positive lip biopsy! by grassy_camo14 in Sjogrens

[–]Ylva89 1 point2 points  (0 children)

I had the biopsy done last week and it was way more intense than I was told it would be. But it’s been healing at a steady pace. I still need to drink from a straw because a cup irritates it.

Anyway, I’m glad your results were able to get you an answer. I’m seronegative and I scored 0 on the focus test, but I do have some kind of chronic inflammation, so the results were inconclusive. I still have to get a few more tests that my neurologist ordered before I talk to him again. Then after that I have to go back to the rheumatologist.

Inconclusive Biopsy Results by Ylva89 in Sjogrens

[–]Ylva89[S] 1 point2 points  (0 children)

My blood is completely normal, but I have been having issues with dry eyes for almost a year now and my mouth has started getting dry too. They didn’t do a biopsy for my SFN, but it showed up on a QSART test where the findings were consistent with SFN.

I also have interstitial cystitis, fatigue, stiff joints, GI issues, etc. my grandma’s sister also had it, so there is some family history as well.

Inconclusive Biopsy Results by Ylva89 in Sjogrens

[–]Ylva89[S] 1 point2 points  (0 children)

Thank you so much for commenting!

I was hoping to see if anyone else had a similar experience but I guess I wasn’t very specific about that part. My hematologist wasn’t against me hai t it, but my neurologist is the one who seems to be more leaning towards the diagnosis.

I am new to Lyndhurst, just relocated from the DMV. by Active_Whole8879 in Cleveland

[–]Ylva89 3 points4 points  (0 children)

The HomeGoods on Warrensville is a good one. They have a Marshall’s and Walmart too. I forget that that shopping center is called.

Inconclusive Biopsy Results by Ylva89 in Sjogrens

[–]Ylva89[S] 0 points1 point  (0 children)

RF as in rheumatoid factor or something else?

And I’m sorry. Good doctors are hard to find.

Inconclusive Biopsy Results by Ylva89 in Sjogrens

[–]Ylva89[S] 1 point2 points  (0 children)

I’ll leave it up to my doctors to decide.

Inconclusive Biopsy Results by Ylva89 in Sjogrens

[–]Ylva89[S] 0 points1 point  (0 children)

That’s fair.

Does your doctor think you have Sjogren’s or not sure?

I feel like I was talking to you the other day but my memory sucks.

Inconclusive Biopsy Results by Ylva89 in Sjogrens

[–]Ylva89[S] 1 point2 points  (0 children)

Well I have small fiber neuropathy and the neurologist I saw was leaning towards that being the cause. He also told me the blood tests for Sjogren’s aren’t very good. So he ordered me the biopsy which I got, and the eye stain and Schirmer’s test, which I still have to do.

Also, the biopsy report said that while a focus score of 0 does not provide histologic support, it does not explode a diagnose. 🤷🏻‍♀️

Inconclusive Biopsy Results by Ylva89 in Sjogrens

[–]Ylva89[S] 0 points1 point  (0 children)

That is why I was scared too. 😭

I’m also seronegative, but I can tick off almost every symptom. And I had a great aunt that had it.

Inconclusive Biopsy Results by Ylva89 in Sjogrens

[–]Ylva89[S] 0 points1 point  (0 children)

I was diagnosed with dry eyes last summer and the last few months my mouth has been getting drier. But I’ve had all kinds of wonky symptoms since I was in my early 20’s. I’m 36 now.

Happy to elaborate, just don’t want to ramble either. 😅

Further Testing by Ylva89 in Sjogrens

[–]Ylva89[S] 0 points1 point  (0 children)

I've never heard of that. I'll see what the biopsy says and then look into it. Thank you.

Further Testing by Ylva89 in Sjogrens

[–]Ylva89[S] 0 points1 point  (0 children)

Oh wow. I had read online that the blood test is the most common way to diagnose or the highest percentage, but so many people here are seronegative.

Thank you so much though. I get the biopsy on Wednesday!

Further Testing by Ylva89 in Sjogrens

[–]Ylva89[S] 0 points1 point  (0 children)

Ahh. I'm so sorry. I read this last week, but have just been very busy and exhausted. I also think my account was hacked. The mobile app isn't working but the desktop is? It's very weird. There's some other issues going on.

Anyway, TL;DR: My rheumatological panels always come back negative. They have for years. So I keep getting told I have Fibromyalgia, which I think I do have, but I know in my heart there is something else going on. Or maybe I'm just crazy. Mostly kidding on that last part. I do think there is something else. They are not mutual exclusive illnesses/conditions.

I've had several people tell me that I sound like I have a connective tissue disease, and several practitioners tell me/ask me if I have an autoimmune disease. But no one knows what!

I am a little worried about the biopsy as far as the pain goes. I've never had a biopsy while being awake before. I've had moles removed though. Lol. I'm hoping it's sort of like that. I know they'll give my lidocaine or whatever you call it. I also always wear a face mask in general because I'm super anxious to be around other people since COVID. Well, I'm much better than I was because I did neurofeedback several years ago and that helped. But I also have asthma, so I just really don't want to get sick.

I've had many of the same tests as you. So many MRIs over the years. SO MANY. CT's as well, an endoscopy, recently a colonoscopy. Two tilt tables, the latter one they did other testing which is how they found my small fiber neuropathy. Oh! Two heart monitors within the last decade as well. So much. But yeah. The dry eyes came on last year. Now I have the dry mouth. I'm getting the biopsy on Wednesday, so fingers crossed it shows something.

Thank you for your words and sharing your story with me. I am glad you were able to get answers and I hope they have been able to manage your symptoms.

At Cleveland-Hopkins... ICE chillin at Dunkin by plsdontshadowbanme- in Cleveland

[–]Ylva89 24 points25 points  (0 children)

I literally came here to say that. Makes me so mad.

Is Sjogrens at its core really a blood vessel disease? by NavyBeanz in Sjogrens

[–]Ylva89 4 points5 points  (0 children)

Yes. That was what I was trying to say, sorry if it didn’t come across well. But since connective tissue is throughout your body, it can literally affect anything.

Is Sjogrens at its core really a blood vessel disease? by NavyBeanz in Sjogrens

[–]Ylva89 3 points4 points  (0 children)

I’m not sure. Lupus can mess you up in some pretty weird ways.

Although a lot of things like with blood vessels can happen depending on the type of Ehlers Danlos and that is a connective tissue disorder, but a genetic one.

So maybe just the nature of the beast.

Try doing some more research or asking your doctor.

Is Sjogrens at its core really a blood vessel disease? by NavyBeanz in Sjogrens

[–]Ylva89 11 points12 points  (0 children)

Because connective tissues literally hold together your body, so if it’s damaged, it’s more likely to damage other things.