Anyone here with mastocytosis?

[Marabi]

Hi!

I know many people with dysautonomia also suffer from MCAS and the connection between these two diseases is now confirmed by mast cell experts.

So, I wonder if anyone here has the second mast cell disease, mastocytosis?

I was diagnosed last year with cutaneous mastocytosis. I've had also vasovagal syncope, motion sickness, CFS, many food intolerances and other dysautonomic symptoms.

[merkat30]

I have mast cell activation syndrome I have tried antihistamines I have tried sodium cromoglaite which sent me into currant flare of very high blood pressure on standing high  up 200 sometimes 😱😱high heartrate .then it goes to low blood pressure on sitting laying down  all the usual mast cell stuff lymph gland hurt everywhere my toilet is my new home hives flushing are my new fashion accessories bland boring few food diet 😔😔😔 dont forget the swelling and endless epi pens muscle cramps dizziness migraines i also have a form dysautonomia that they cant pin point but do  have appointment with new doctor in April. I guess what am trying say is I don't no if half this is of mast cell or pots. what medicine do they treat u with ?I still at early treatment but been going on for 7 nearly 8 years now mast cells stopped pot meds working i gradually got worse over years  I actally have a appointment with a dr croom mast cell specialist next week been waiting month getting worse hope today is a  a better day 

[Marabi]

On 3/10/2020 at 12:13 PM, merkat30 said:

I have mast cell activation syndrome I have tried antihistamines I have tried sodium cromoglaite which sent me into currant flare of very high blood pressure on standing high  up 200 sometimes 😱😱high heartrate .then it goes to low blood pressure on sitting laying down  all the usual mast cell stuff lymph gland hurt everywhere my toilet is my new home hives flushing are my new fashion accessories bland boring few food diet 😔😔😔 dont forget the swelling and endless epi pens muscle cramps dizziness migraines i also have a form dysautonomia that they cant pin point but do  have appointment with new doctor in April. I guess what am trying say is I don't no if half this is of mast cell or pots. what medicine do they treat u with ?I still at early treatment but been going on for 7 nearly 8 years now mast cells stopped pot meds working i gradually got worse over years  I actally have a appointment with a dr croom mast cell specialist next week been waiting month getting worse hope today is a  a better day 

merkat30,

Really sorry for the late response, I've had an error on this side for about a week and later I've forgotten to check.

Yes, cromolyn sodium is overrated! It made my diet even more strict, after taking it I've still had "allergy" to potatoes. Sorry to hear about your strict diet, by the way I now how does it feel...

I have similar problems with recognizing, which symptoms is from which illness.

You asked about meds - I've been taking fexofenadine, now I have prescription for rupatadine. I still haven't bought these meds, cause I really don't know if it's a good idea (I have many meds sensitivities, but docs don't seem to care.). I also had dr appointment few days ago with mast cell specialist. But I must say I'm quite dissapointed...

This situation with virus made doctors to online contact and now I can talk with specialists, that weren't avalaible for me before, because of my sickness. I have appointment with another doc in few days, after Eastern; this time it will be dysautonomia specialist and I'm very exited, I've never talked with this kind of specialist before. 

How was your dr appointment? I hope you feel better today!

Best wishes ❤️