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.

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.

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!

Hi...I had a great dermatologist that did not specialize in MCAD, BUT he did know of urticaria pigmentosa, TMEP, and also what mast cells look like in the skin. Perhaps a good dermatologist in your area who has been doing this a long time can help your son. They could have the spots biopsied....I just read my report. A mast cell stain has to be performed with toludine blue and giemsa stains. A good dermatologist and pathologist should be able to help you with at least this part. I just called around to multiple dermatologist offices until I found one who was familiar with cutaneous masto, UP, TMEP, etc.

Not sure if this will help but this is what came to mind. It may not have anything to do with what you're saying but it mentions panic disorder and dysautonomia and it's interesting. http://www.panic411.org/#Dysautonomia

I just got some labwork back I'm very concerned about. Eosinophils were high....1179 and they are supposed to be under 500. Lymphocytes are low 764. I was just diagnosed with cutaneous masto (UP). I'm overwhelmed. I started on Singulair a week ago. I had a really bad cold when I had the labs done. Does anyone know what to make of these labs? My docs don't.

Um, Am I missing something??? I have been getting bouts of dizziness, feeling kind of like vertigo. No spinning, just like I feel the room shift down and around or something. Especially when standing or when moving my head a certain way. I do have popping in my ears and lots of nasal congestion. I take my standing blood pressure and it's normal. So what in the world is the dizziness, vertigo type feeling from then??? Is this the life of POTS and Mast cell activation people? I just want to make sure I shouldn't be getting this checked out!

Hi...you're not that far from Mayo Clinic in Jacksonville. I had a pretty good experience there. Dr. Vankat is an EP there great for POTS. Dr. Cheshire does autonomic testing there. He is the head of the neurology department. I brought a 3 inch book of medical records regarding myself and he sat and read each page right in front of me. That impressed me. He didn't tell me much BUT he did a lot of testing on me that a regular neurologist would have no clue to do. He is a very nice man and incredibly smart. I think it would be worth a trip if you could see multiple docs there to try to hammer out your medical situation.

My POTS doc recommended them too BUT he said he gave up trying to get his patients to wear them so he tells them to get the knee highs now. I wear them, open toed, and they do help me.

Hi Amanda! I have lots of faith in God too and that's what gets me through this craziness. I live in South Florida. You are really blessed to live in Jacksonville! Mayo is there. Have you been yet?

Hello, I'm going through quite a lot. As ya'll know on here, I have a 1 year old and 4 year old. My condition is causing me to be VERY LIMITED in what I can do and my live in nanny is helping me a lot. Well she just told me she cant do the job anymore but will work with us on finding someone new. I live in a house with stairs which further exacerbates my condition. I have POTS/dysautonomia, and was just diagnosed with UP/cutaneous masto. I have high methyllhistamines, normal tryptase, normal CBC's. Skin biopsy showed high mast cells, spindle shapes. I need advice. My local hematologist wants me to have a CT scan of my chest, abdomen, & pelvis. Then he wants to do the bone marrow. After that, he wants to try to get me into NIH. I'm only on Singulair, Claritin, and Pepcid twice a day. He won't give me any more meds. I'm so stressed I live in South Florida. It takes 6 hours to get to Mayo to Dr. Candido Rivera. And a plane or train trip to Boston or Virginia to see the experts seems very scary right now. My husband thinks I should just get the BMB with the local guy and repeat if necessary. I feel like all the CT scans are a bit much. But then again I have no idea b/c I'm new to learning about the mast cell stuff. Is it really necessary to try to go to Mayo or the experts for this? Would I need to premedicate for these scans and bmb? I'm very overwhelmed and stressed with living in a house not meant for me and a nanny that's saying she's gonna leave me with kids I can't take care of, especially with stairs. My head is spinning!! I don't know where to turn except for advice here and to God. I'm seeking answers. I don't know if I should be trying to move out of this place to help myself and my caregivers b/c of these stairs, or traveling to Mayo or beyond, or going local so as not to stress my family anymore. My 4 year old tells me everyday he doesn't want me to leave him and go to the hospital (probably b/c I've been hauled away by the ambulance so much and at the doc). My son is having daily tantrums of rage. My poor husband is so stressed dealing with everything. GOD please help me!!!! Any thoughts????

I'm not trying to scare. Just educate. Sometimes I get scared too but from what I understand and as long as God wills it, I'm not gonna die from this. It's just a major inconvenience and needs to be managed. Does that sound right Julie? Sarah?

I do not exhibit a darier sign. No swelling, itching, or redness when stroked. Maybe the pics look like that but it was the way the sun was coming in. And yes, they look like absolutely nothing. I wanted people to know you can have something look very benign and it actually be something. And the dermatologist actually told me that other dermatologists over look this all the time.

Hi all, I posted these pics in another place but just in case you didn't see my other topic, I was recently diagnosed with urticaria pigmentosa or cutaneous mastocytosis. I have a NORMAL tryptase just so everyone knows and it's not high normal. It's just plain normal. And it's been tested multiple times. The only reason I got the skin biopsy is because I has high methyllhistamines in my 24 hour urine and no doctor would diagnose me with a mast cell disorder. PLUS, my twenty billion doctors have "ruled out" mast cell disease so many times and I want everyone to know if you think you have it....get the testing done!! 24 hour urine methyllhistamines is what I got done. Here's the pics: https://picasaweb.google.com/103043308031588199236/20110422?authkey=Gv1sRgCKy2ha_W8tzmlgE# let me know if this link doesn't work. pic #1 the spot closest to my finger was raised like a mole. The one to the right is flat. pic #2 this is a small flesh colored bump...hard and raised, like a pimple, but doesn't pop pic #3 this is my full arm...you can see the scab from the biopsy, and pic #1's spot is to the top right of the scab (about 2 o' clock). Towards the top on the left side of my wrist is pic #2's spot. I had another spot on my shoulder that I have nothing to compare it to but if was a brownish red mole with very light little capillaries in it.

Here's the pics: https://picasaweb.google.com/103043308031588199236/20110422?authkey=Gv1sRgCKy2ha_W8tzmlgE# let me know if this link doesn't work. pic #1 the spot closest to my finger was raised like a mole. The one to the right is flat. pic #2 this is a small flesh colored bump...hard and raised, like a pimple, but doesn't pop pic #3 this is my full arm...you can see the scab from the biopsy, and pic #1's spot is to the top right of the scab (about 2 o' clock). Towards the top on the left side of my wrist is pic #2's spot. I had another spot on my shoulder that I have nothing to compare it to but if was a brownish red mole with very light little capillaries in it.

the lidocaine is for the bone marrow biopsy My hematologist has already told me he can do it.....but I'm only the 2nd person he has had in his career with this. The first one he referred to NIH. That's what he plans on doing with me once he gets the CT scans and bmb done. I just don't know what to do. If I should let him do it or let Mayo do it. Really not sure.....my hematologist is 20 minutes away. It's pretty tempting to let him do it but a lot of people say on forums to only let a mast cell researcher do it. Why is that?

Yeah....definitely not looking forward to the ct scans or bmb. I will tell you my spots and weird things on my skin do not itch, they don't have the darier sign, they don't swell up or turn red. Nothing. And believe me, I tested them thoroughly before I went to the dermatologist I want to get my pics somewhere accessible b/c I'm telling you they don't look like anything. To answer Julie's question, one spot here or there. Nothing gathered closely together. And they are so small. Not even dark. If I wasn't totally paranoid, I would have never seen them. The small freckles on my arms are light brown. I noticed new ones different spots and I'm never in the sun. I thought, okay, if I'm never in the sun, why do I have this tiny little new freckle on the inside of my arm? My dermatologist told me that other dermatologists over look them all the time b/c they are totally benign looking. I know that I had a spot on my back which I never saw but he told me it was small reddish with tiny veins in it. I had a small bump come up, it almost looked like a zit that wouldn't pop but it was flesh colored and hard. I just assumed it was a mole. All of the spots look very different but all had the mast cells and the spindle shapes I guess...whatever that means.

Okay....I think I need help getting these pics up!!! I want to help everyone, I just don't know how to get these things public. I will have to ask my hubby on Julie's suggestion. Any other suggestions on how to get these up? And yes, denial is here. BUT it's slowly going away as the talk of bone marrow biopsies come up. My hematologist called and wants me to go to NIH....not sure if I want to be a lab rat. But it would be free. Don't know what to do. I'm really scared it's gone systemic. But faith and hope tell me otherwise. I feel like it would be a lot more evident if it had. My hematologist also wants CT scans done of my abdomen. Any problems with the lidocaine or barium for us?

I want to tell you how much I appreciate you helping me. I also want to post some pics somewhere of my skin because I'm telling you, it looks NOTHING like the pics on the internet. I just noticed some small brown freckles, that I had never noticed anymore. So benign looking, let me tell you. Now does my muscle pain have something to do with this? And lymph nodes that hurt? My CBC blood work has been normal. My tryptase is normal. I suppose I have had some "anaphlaxis" episodes in my life but never full blown use an epi-pen type episodes, thanks be to GOD. Since I have had POTS, it's mostly just sudden blood pressure drops, dizziness, nausea, "D" as you call it, and some periods of not feeling like I can't breathe normally. Flushing too. I had been doing better on my histamine free diet and then all of a sudden it turned hot down here in south Florida and forget it. Daily episodes of near syncope, itching, low blood pressure, dizziness, nausea, feeling hot, etc. Do any of you have this in your skin? I'm so scared it will turn systemic. If you looked at my skin you would be shocked. It looks totally normal. I went on a desperate whim to my dermatologist who is amazing, Dr. Peter Wallach in Coral Springs.

My hematologist is NOT a mast cell researcher. He doesn't know this disease I don't think. He was the one that told me I'm thinking I'm going to try Candido Rivera at Mayo. But I'm not sure yet. Trying to get my cardiologist to work with one of the mast cell researchers to at least give me the right medications. I take one claritin, 10 mg. singulair, and pepcid 20 mg. twice a day. My hematologist won't give me any more meds even with this diagnosis. Ridiculous. I live in South Florida. I do believe the bone marrow biopsy is inevitable. I just want it done by someone who knows what they are doing. Perhaps a train trip to Virginia is in order. I don't know. I'm still thinking and mulling this all over. Praying. Thank you both for responding.

AND I forgot to mention my hematologist is mentioning CHEMO to treat this. WHAT?!? AND he wants to do a bone marrow. I have a normal tryptase and all my white blood cells are normal. NOW WHAT?!? Trying to keep the faith over here but I'm struggling!!!!!!

Hi Shoegal, I'm Godsgal (although I like shoes also) I know what it feels like to be the newbie....not fun. I would suggest you find an electrophysiologist that is familiar with POTS and speak to them about your symptoms. Ask if they can do a tilt table test on you. That would be helpful. It's all about finding doctors that are familiar with POTS so you can get treatment if in fact that is what you have. Anxiety and panic attacks. Just chalk that up to ignorant medical people. You will find all of us on here have been accused and dismissed of that. We all understand on here the fear that comes with these symptoms. Research as much as you can and please read the what to avoid and what helps section on the home page if you haven't already. Take care

I can't believe it! My dermatologist just called me and told me the spots on my body are urticaria pigmentosa/cutaneous mastocytosis. I'm shocked. In disbelief. Denial. I've been searching for the cause of this and I can't believe I have found it. Someone, tell me what this means!! Help!! A little dumbfounded right now. I have a normal tryptase. I'm not really sure what to do. I was just started on singulair 10 mg, and I take Pepcid 20 mg. twice a day, and 1 Claritin. Plus my beta blocker & Midodrine. ANY help would be greatly appreciated.

Wow....what a mess you have been through! Well I feel confident enough to say you have found the right forum and you are getting somewhere! Finally! Get to a POTS specialist asap and they'll give you the TTT. If you're not close to one, find an electrophysiologist and call ahead to make sure they are familiar with POTS. Now look at the home page list of things that help and things to avoid and do them so you can get relief! Take care and feel some relief! You're on to something now.

I'm sensitive to fragrances and also certain smells from foods. I get really ill actually. Tachycardia, feeling faint, burning eyes, coughing. I feel the same feelings of being unsocial and avoiding certain situations....going out without the wheelchair, avoiding the heat, social gatherings with a lot of warm bodies and smells. But I know there comes a point that I have to try and see how it goes. I haven't gotten there yet though I want to let myself get on the right MCAD meds before I do.