Cutaneous Masto--Dr. Afrin Spoke To My Doc

[Godsgal]

First of all, let me say I love this forum and I appreciate all the love and support the members here have provided me.

I think I'm finally getting answers to why my POTS/dysautonomia is happening. As ya'll know I was diagnosed with cutaneous mastocytosis recently.

One of the leading mast cell specialists, Dr. Afrin, spoke to my cardiologist today! AND I got an appt. with him May 23rd God willing. He told my doc to get me off the beta blocker and the midodrine. Start me on pepcid 40 mg. twice a day and claritin 20 mg. twice a day. He thinks I have gone systemic due to all the crazy symptoms I'm having. I don't think so but I'm not a doctor. My cardio wants me to stop my midodrine & my toperol. It's scary to stop those things because I've taken them since the beginning. He wasn't a huge fan of me being on singulair or taking benadryl. Not sure why that is but when I find out I'll let you know.

Anybody who knows anything about systemic masto I would appreciate any input.

Love ya'll and thank you!

[juliegee]

Woo Hoo!!! Sounds like progress to me. I agree that many of your symptoms seem systemic. I am very eager to hear more about Dr. Afrin & I'm so happy you have an appt. to see him.

Benadryl has never been good for me. I even had a bad reaction to it (via injection) in the hospital. Singulair, on the other hand is a godsend....I have heard that taking it long term can make us more susceptible to some types of vasculitis...

Have you put off your CT scans & BMB for now? I think that'd be fine as you are seeing Dr. Afrin so soon.

PLEASE share your impressions of Dr. Afrin. I plan to see him soon to pursue whether or not my MCAD is clonal vs. nonclonal, etc. We are blessed to have such a knowledgeable & helpful mast cell doc in the Southeast.

All the best-

Julie

[Godsgal]

Hey Julie-----What sounds systemic about this? I really hate hearing that because it scares me! I don't understand it ya know? I don't know about systemic masto and what it can turn into. For some reason I feel like it is a death sentence. And that's not faithful I know. I just need to know the facts about what I have. What exactly would it mean if it was?

I have a normal tryptase and normal white blood cell count.

And apparently he wants to stop me on the singulair too. Scary changing my meds all around.

I'm starting to think I need to get this ct scan done. I don't want to though. I feel overwhelmed and upset. I almost feel like I'd rather the bone marrow first.

[sue1234]

Now, where is Dr. Afrin at in the southeast?

[juliegee]

Sue, I believe he's in Charleston, SC.

Jared, in past posts you described some decidedly "anaphylactic" symptoms in response to warm weather, for instance- BEFORE you knew you had masto. It's obviously in your skin, but your symptoms are way beyond that, even POTS is a symptom. I think with the proper meds, you'll get those symptoms under control.

As far as whether or not you have SM...??? No idea. I pray not, but many with it do fine on the proper meds. Let Dr. Afrin help you sort it out. I just see your symptoms as more than cutaneous.

[Victoria]

I think I'm finally getting answers to why my POTS/dysautonomia is happening. As ya'll know I was diagnosed with cutaneous mastocytosis recently. One of the leading mast cell specialists, Dr. Afrin, spoke to my cardiologist today! AND I got an appt. with him May 23rd God willing.

I'm seeing this as a GIANT step in the right direction! Yay for you! Please try not to be frightened, nothing has changed except the direction your diagnosis may be headed.

xoxo and blessings to you.

[louloutinks]

A question for Macks Mum.....you mentioned 'anaphylactic symptoms in hot weather'. Just wondered if you could tell me what they could be.

The reason why I am asking is because I used to be able to sit in the sun all day (if I wanted to)with no ill effects and about 5 years ago I was in the sun on holiday and started coming up in heatrash and hives, which the paramedics at the hotel recognised but another rash that they did not know. Anyway since then, I have come up in lumps if I sit in the sun. I also have some weird bumps that look like the pics Godsgal put on here that swell up if rubbed with redness around them.

A couple of weeks back, I sat in the sun for about 10 mins, started getting tachy and headache and noticed reddy brown spots under my skin. I went indoors and by later on my legs were covered - it looked like I had measles. There were also the usual lumps I get in the sun.

I went to the doc and he seemed unsure but said it is probably due to the collagen issues with my EDS. The rash looked like the middle pic in this link and it lasted for nearly a week. I still have a couple left over. The only thing is is that they did not swell up like UP when rubbed so I really haven't got a clue what they are.

Sorry for jumping in on the post, but thought all ya'll seem to know a bit about rashes

[nunntrio]

Do you get the flushing that is uaually associated with Masto. My Dr.'s ruled this out immediately because I do not get flushing.

[Godsgal]

You can always jump in on a post!! Maybe I should apologize for jumping in and commenting when you asked Julie a question. That really sounds like urticaria pigmentosa to me. I would get a skin biopsy if I was you from an experienced dermatologist and make sure they do a mast cell stain on it. I will tell you my UP does not swell up at all. I scratch it and it does nothing. There is a rare form TMEP, that I don't believe swells up. And the sun bothers me too.

[Godsgal]

Do you get the flushing that is uaually associated with Masto. My Dr.'s ruled this out immediately because I do not get flushing.

It seems like I have had this for a while and I NEVER flushed. I would get hives quite often and that was it. I moved into a house with toxic mold and that sent it all over the edge. I started flushing and then went on a histamine free diet and it subsided.

[sue1234]

I developed flushing last year, really bad since last December. I am also pretty sure we have toxic mold in our house. I've kind of gauged if I was reacting to mold by any respiratory symptoms. I don't have any, so am assuming that I am not reacting. I have read on many mold sites about symptoms, and almost all mention respiratory.

And as far as doing something about it, when insurance doesn't pay a cent to have any of it cleaned, what do you do?? We don't have the money to even begin to clean it up.

[louloutinks]

Thank you Godsgal! You can jump on my question too lol!! I looked at the TMEP you mentioned and it looks exactly like that. Mine only lasted a week with a few odd ones left here and there now though - I read UP got worse over months.Mine started with a couple just above my knees and then on the rest of my legs by the evening. I have seen some pics on the net where people are smothered but I am not so not sure if this is the case then with me.

[louloutinks]

Meant to ask...is there a link with this and kidney function? I have been told my kidneys are not functioning at the right level - but why I do not know. GFR first test was 49, second test was 60.

[Godsgal]

Thank you Godsgal! You can jump on my question too lol!! I looked at the TMEP you mentioned and it looks exactly like that. Mine only lasted a week with a few odd ones left here and there now though - I read UP got worse over months.Mine started with a couple just above my knees and then on the rest of my legs by the evening. I have seen some pics on the net where people are smothered but I am not so not sure if this is the case then with me.

Well I am not smothered at all. If you are concerned or get a weird feeling about it, get a knowledgeable dermatologist to check it out! It's really quick and easy to get a biopsy. Better safe than sorry....just get one if you have insurance to cover it.

As far as the kidneys, I don't know. I know that mast cells can affect organs but I HAVE NO CLUE about the kidneys and the functioning. Perhaps Mack's Mom knows about this.