another Mast cell question

[Loulou]

Hi Everyone,

My POTS Dr. is NOT currently seeing patients because he has POTS himself and is having a hard time medically. Could you please share how your mast cell began. I feel like I have a very mild case and really think mine is just in my lymph nodes and skin.  But this could be just my not knowing enough on the subject of mast cell.  My primary care doctor is (willing and trying) to treat me since I am unable to see my POTS Dr. and wrote a prescription for Singular and Clarinex on Monday.  He told me he does not know a lot on either POTS or Mast Cell but is willing to try to treat me. So how and where you started would be great info.  I have googled Mast cell and I understand the just of it.  But what I don't find or see is how it began and what people first notice. And exactly what happens to the body when mast cell is active.  Currently, I get tiny red spots or bigger blotchy red spots mostly after showering that does go away after an hour or so. I seem to have a lot of scattered Urticaria pigmentosa and  diffuse cutaneous mastocytosis, that seem to never go away.  At least based on the pictures on the internet.  What kind of Dr do you see for treatment of your mast cell?  Also, yesterday, I was diagnosed with Glaucoma, I am 44 years old. The normal age for Glaucoma is 60.  So can Mast Cell cause Glaucoma?   For you ladies, how do you cover mast cell on your face?  Thank you for any info you can share and for listening. 

[DizzyGirls]

My daughter is currently seeing her hematologist for possible mast cell issues.  She just did a 24 hr. urine culture and had some blood drawn to check urine histamine levels, plasma histamine levels and tryptase levels in her blood.  We'll see what comes of all this!

[Loulou]

I hope it goes well for you two. Seeing a dr who can teach and treat you right makes such a difference. 

 

 

[Katybug]

Mastocytosis is a different diagnosis, although similar symptoms, from MCAS. If there is reason to believe that you have actual Mastocytosis, in any form, that should be evaluated and ruled out before assuming you have MCAS. That's important. Mastocytosis is an overproduction of mast cells. MCAS is dysfunction of a normal amount of mast cells. There are differences in treatment and the implications of the disease processes.

I would guess that the reason you aren't seeing how it started for people is because it is an illness that is so different from one person to the next, just like POTS. for example, I'm not sure when mine began because the symptoms overlap with POTS and EDS symptoms.  I've had severe environmental allergies since I was little. I also had mild but chronic hives and rashes throughout my life but never to the point it was a problem before. I started having GI motility issues as a young child. I honestly don't know which of my diagnoses were responsible for these lesser versions. My search for a cause of my POTS led to my MCAS diagnosis but it doesn't explain all of symptoms. 

[Loulou]

Katybug,

Yes, your right.  My PCM asked when these symptoms started and I don't know what to tell him, so I said I really don't know whats POTS, Inappropriate Sinus Tachycardia, or what parts would be MCAS, Mastoycytosis, etc.  They all overlap. It's a struggle, my test were not handled correctly and is not accurate, and this was the best local lab available.  

[Katybug]

I know it's frustrating.  Just keep your chin up and keep working at it. You are your own best advocate. 

[Loulou]

Katybug,

Thanks for the encouragement.  I just wish I knew more and what direction to go, I am very flushed today, but getting an appointment while having symptoms is an issue. Can't be seen until next week.  I am very frustrated, your right.  

[Katybug]

Take pictures every day.