Sjogrens and dysautononia and mast cell activation

Posted by debbieguk @debbieguk, Feb 11 5:47am

Does anyone have the three conditions I have.

The only place i have seen these grouped together is by the Neurologist at Mayo clinic so I'm so happy as this explains my presentation totally.

However no one UK side sees these correlations so it's tricky to get help for the myriad of symptoms across my whole body

Wondering how you manage the nerve pain and any treatments you found worked for excess sweating ..

Which tests are needed for small nerve fibre issues I'm concerned re progression ie permanent damage vs reversible inflammation

Pots and fatigue

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

Becky, Volunteer Mentor | @becsbuddy | Feb 12 5:42pm

In reply to @becsbuddy "@debbieguk Good morning or maybe it’s evening for you! Welcome to Mayo Clinic Connect. We’re a..." + (show)

The above link to the discussion about neuropathy doesn’t work. I put another one in a comment.

debbieguk | @debbieguk | Feb 12 5:47pm

Thank you Becky

moylandavis | @moylandavis | Feb 13 6:31am

Facebook has several groups that may be of help- mast cell disorders forum has over 38000 members… there are other groups…just run a search on fb and you will find them…there is even one for POTS! There are lots of members in the UK. You may find info on medical resources in the UK.
Per these groups, Mayo Clinic has turned away MCAS patients, but will see mastocytosis patients,
https://www.mastattack.org/ Is also an excellent website…
Any chance you r taking B6 supplement that maybe causing neuropathy…

debbieguk | @debbieguk | Feb 13 7:05am

In reply to @moylandavis "Facebook has several groups that may be of help- mast cell disorders forum has over 38000..." + (show)

Yes I am already on many groups just wanted to speak with others with the same presentation ...

Sjogrens and mcas causes small nerve fibre neuropathy. My B levels are normal and it's not diabetes . I'm looking for information really from those who have the same conditions to ideally share. I already know what I have.

sophiaresop | @sophiaresop | Feb 13 12:03pm

In reply to @debbieguk "Thank you My daughters also look like they have familial Pots aka mcas so it's a..." + (show)

Okay let me know if you can access the note(s) I added below!! I really hope it helps!! It’s for MAST CELL/POTS and SJOGRENS. It has orders, codes, explanations for each and simplified versions for each. I really hope you feel better soon ❤️