Sjogrens and dysautononia and mast cell activation

@debbieguk Good morning or maybe it’s evening for you! Welcome to Mayo Clinic Connect. We’re a large group of caregivers and patients who all work together to help everyone reach their best outcomes. Here are 2 discussions to get you going. And there are lots more!
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/&
https://connect.mayoclinic.org/discussion/mast-cell-activation/
I found these discussion groups that you may want to look at and ask questions.
Since you went to Mayo, you must have access to their portal where you can ask questions. Did the doctors at Mayo Clinic give you a plan of care to share with your doctors in England?
Also, there is a branch of Mayo Clinic in London.
https://www.mayoclinichealthcare.co.uk/
Please look through the discussions and ask all your questions!

Hi Becky

I didn't go to Mayo although I wish I could
I just watched an inspirational You tube video of the neurologist there
I had no idea there was a Mayo clinic in London either so thanks
I shall check out those groups too

Hi Becky the link to the neuropathy isn't working sadly

The posts on MCA are very old ie 2017 and more information is now understood about MCas. I'm very knowledgeable myself and hoping to find others with my conditions

Hi there I have been dx with Sjogrens. I also have POTs small fiber nueropathy and horrible fatigue. They say also lupus. It’s been a lot to go thru even here in US. There’s a connection with Sjogrens with these from what I have researched. For awhile everything was being handled separately which made it very hard on me. Rhuemy has tried lyrica for nueropathy but it can make u drowsy. Ia m now trying nortriplyine low dose for nuero pain. I don’t think a lot of ppl get he pain. It’s a viscous cycle. I had a biospy lower right leg and upper calf that dx the small fiber nueropathy by my nuero. I was having weakness down that side. Have u ever been tested for Sjogrens theu bloodwork. Symptoms dry eyes and dry mouth and even now iam learning nueropathy and Dysautonomia. It’s hard here to find drs knowledgeable about pots. I was passing out everywhere before they pieced it all together.

Still after nineteen yrs and a quick trip to Johns Hopkins .. still trying to get Rhuemy on board

Hi Thank y so much for replying

I'm not positive for the antibodies bjt neither can 40 per cent of cases

but do have rheumatoid factor and gastric cell antibody positive antibodies that can go with sjogrens

I do have severe dry eyes under opthalmology and on 4 diff drops gell

Dry other parts of me but not mouth yet

The nerve pain is awful

I've not been assessed for it

I'm under rheumatology who wants the lip biopsy now

But on top of those two I have mast cell activation so been v poorly and as y say no one joins the dots
.but me...

I'm on a dmard already but it's damaging my white cells and neutrophils so thet reduced it and woow my nerve pain went up another level so it's def an immune issue no doubt

So I'm going on hydrox soon

Going to an autonomic unit but will be a long wait for my heart bp nerves and sweating issues in London

Life is hard with one of these but 3 is v challenging

The nerve pain and sweating are v diff for me.

Last year I was anaphalctoid to foods

So been tough

Hope yr fairing better

I totally get it. I was sent out of state. They wanted me to come back and do ivig. Rhuemy tried rituxin but then bothered my stomach. Iam just coming off a flare up. Nuero pain bad. It’s a lot to deal with. I have one daughter and she has Sjogrens as well. It’s been challenging to say the least. All of makes our autonomic system screwed up. I pray I find answers.

Hi! Im sorry you’re going through this.
I’m going to do some work and try to answer a few of your questions- my daughter had a mast cell scare, it was a false alarm but it gave me excellent resources! I’ll be back!

Thank you

My daughters also look like they have familial Pots aka mcas so it's a lot to process

@debbieguk I’m so sorry about the link that didn’t work! Here is a new one and I tested it.
https://connect.mayoclinic.org/group/neuropathy/
Sure hope it will work for you!