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Sjogren's Syndrome Support

My appt yesterday (11/21/16)

I am SO sorry I didn’t post yesterday. I ended up taking my Grandma with me to my appt. She is 83 and is very sick. We registered at 12:45 and I got home at 5:05!! So I was exhausted!!

Anyway…she ran a UA…no signs of infection. Urine looked great. She is referring me to a urologist! But due to Thanksgiving it may be next week before I even get an appt.

Thanks you all so much again for your concern and for your support!! I feel like I have A LOT on me right now and it feels good knowing I have a safe place!

Hope you all have a WONDERFUL Thanksgiving!!!

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Hi Limarie- how’re you doing, and hope that you’ve survived Thanksgiving? Hope that Grandma is feeling better too?

Thanks SO much for asking!! I survived Thanksgiving. But I am having a very hard time emotionally right now. I am taking each day as it comes and dealing the best I can.

Physically, I continue to have more problems. I now have an appointment with a urologist on 12/22 and it seems like more problems reveal themselves on a weekly basis. I have lost weight (unintentional) 10 pounds in the last 10 weeks. My appetite comes and goes. It’s gone most of the time. I am sweating a lot lately. I was at my hair salon the other day. It was freezing in there. My finger nail beds were blue. But when I got up from my stylists chair, my back was dripping with sweat. And I was only in that chair for about 15-20 minutes. I have been in that chair for much longer and that has not happened before. The sweating while my body is cold has happened a couple times before…

And these problems listed above are not all of what I have been experiencing since Thanksgiving!! I just don’t know anymore! All I can do is go to my Dr appts and take my meds and not give up!!

Thanks so much for asking about me!! Hope you had a good Thanksgiving!!
Oh and my Grandma is much better now! Thanks!! :smile:

Have a good weekend!
Lisa

Sorry to hear that you’re getting so many new symptoms, it must be really scary…
There were a couple of discussions a while ago by members who’ve had spells of sweating, although I think it was more a night. The obvious conclusion to jump to would be could it be hormones, but it might help to have a search through those and see if there’s any helpful advice- at least you’ll know that you’re not alone, at least! Here’s a couple of links:


Thinking of you!

You are so sweet Jules!! Thank you so much!! It is comforting knowing I am not alone. My sweating problem is not night sweats…it’s more like anywhere, anytime sweats. But it only seems to happen when the rest of my body is freezing!! Very odd!!

I haven’t lost any weight in a couple days. So that’s good! Appetite is still in and out. But something strange happened Saturday night (12/3). My husband’s annual office Christmas party was that night. So I made it through the meal and set my plate to the side of the table and went to pick up my unused silverware and it took me three tries to be able to pick up my butter knife & spoon (the spoon was laying on top of the knife). It’s like I couldn’t get my fingers to “understand” what was supposed to happen…

The numbness/tingling in my fingertips has increased lately. I feel like I am falling apart!! Thanks for letting me vent!
You are a doll!!
Hope you are doing well!
:santa:

That sounds like it could be peripheral neuropathy- sorry, I can’t remember if you’ve been diagnosed with that or had tests? Glad you’ve not lost any more weight- I have the opposite problem!! (Not that it’s medical, just stress and comfort eating!!)
Glad you’re finding the site helpful!

My Rheumy has mentioned PN a few times at separate visits but nothing has ever came of it. He can be a bit dismissive sometimes. You know…he is not the one living with it, so he really doesn’t care.

Oh believe me…I need to lose about 20 more pounds lol I never had a weight problem until I started my mental health journey 14 years ago. Seems like just about every med’s side effect is weight gain. And that is depressing by itself!!

My next Rheumy appt is 12/12 and I am hoping to actually feel like I am getting somewhere with my treatment. I will be on plaquenil for 5 months on 12/18 and while I feel some benefits from it, I really don’t feel like 200 mgs twice a day is strong enough for me. I flare a lot and struggle with extreme fatigue quite often.

I am VERY glad to have found this site!!

This thing of ours is so complex. Its hard to tell what it a symptom of the meds and what is just a symptom of SS, itself. Always glad to hear others talking about it….helps a lot.