Questions In Preparation For Allergist Appointment

[ajw4790]

Hiya,

This week will probably be my last chance to have an appointment with this allergist that is familiar with the relationship between POTS and MCAD. I have seen her once before, and she saw the dermagraphism, livedo reticularis, etc. But, seemed to think I did not quite fit the profile for MCAD, but there are just so many quirky things about me, and so many can at least be partially explained by MCAD. So, I still want to find out if I may be dealing with something along these lines.

I have a feeling that she will dismiss any concern I have because I did not show any allergies on the RAST test (even though I really do not consider myself sensitive on most occasions to those allergens that were tested).

Also, my C3 complement was 157 (high being 178), C4 complement was 29 (high being 42), and IGE of 11.6 (low 7 and high 135). Which reads as normal, but isn't this something that changes pretty frequently (or with MCAD "spells")? And in reality to me the IGE seems pretty low, although not abnormal...

For those well versed in MCAD do these results point to anything? Should I ask for additional testing?

Still so confused on this topic... Have had some bad bouts of bone pain after direct contact with known irritants/triggers. That throbbing bone pain is some of the worst!

I also, recently, had a weird reaction aften a neuro. exam with a different dr. They were checking my pain sensation with the safety pin. Nothing abnormal for me during the test. While still in room and on table after test, my neuropathy pain flared up big-time for what it has been like in recent months. Then this was followed by EXTREME itchiness everywhere that I was poked. Then, within 10 minutes every place that the dr. poked with the safety pin was a nice itchy red spot. My arms and legs felt like they were on fire. It was awful... I wondered if this was consistant at all with MCAD?

Thanks for any light anyone maybe able to shine on this topic! I am still searching for anyway to make sense of some of these really odd reactions...

Thanks!!!!

[flop]

Hi, I know a little about allergies and MCAD as I am trying to figure out what is going on with my own body at the moment.

IgE is the immunoglobulin involved in classical immediate hypersensitivity reactions (such as hay fever, peanut, bee sting etc) it is different to the pathways involved in other allergies such as contact dermatitis from washing powder.

People with severe immediate allergies would be expected to have high IgE levels. People with MCAD would normally have normal levels of IgE as MCAD isn't a proper allergy - it is a reaction like an allergy but without an allergic trigger. This can be complicated as some people have both immediate allergies and MCAD so their IgE would be high.

RAST testing will detect specific high IgE to a particular allergen. For example if you were highly allergic to peanuts your peanut specific IgE would be high even though your total IgE might not be much ablve normal. People with MCAD but no true allergies will have normal / negative RAST tests.

Pin pricks becoming itchy red spots - that is a classic dermographism response to the pressure on your skin. The pressure has caused mast cells to degranulate and release histamine which in turn causes the itchy wheals.

Sorry I can't answer your overall question but I hope these little bits of info make sense to you.

Flop

[tinkerbella]

i had the rast test and and barely nothing showed, i did start itching like crazy and was bright red. They had never seen anything like me and hours later had no voice. It was new year's eve and I ended up in er for eppie pen treatments. my doc was so scared he was from a different hospital, but met me there. He had no idea why. I celebrated the new year with friends waiting to be discharged to their house as they wanted me watched for the night.

i was allergic to many things, no one could explain my IgE was off the wall this was back 15 years ago. when i called back they said that is for people who have lots of allergies. I'm on Allerga 24/7.

Is mcad something new? I've itched for years slowly been in the hospital for what they thought was asthma/allergic reactions and was told now I never had asthma. So it had to be allergies making me wheeze.

So what is mcad? or what is the best link to go to?

thanks.

Blessings Bella~

[flop]

MCAD = Mast Cell Activation Disorder.

It is a condition that has the same symptoms as severe allergies (including anaphylaxis). In an allergic reaction the allergen is recognised by the bodies immune system as a threat and chemical signals cause mast cells to degranulate (burst) and release histamine.

In Mastocytosis the body has far too many mast cells.

In MCAD the number of mast cells is normal but they behave badly. The mast cells can suddenly degranulate without an allergic trigger.

Flop

[tinkerbella]

MCAD = Mast Cell Activation Disorder.

It is a condition that has the same symptoms as severe allergies (including anaphylaxis). In an allergic reaction the allergen is recognised by the bodies immune system as a threat and chemical signals cause mast cells to degranulate (burst) and release histamine.

In Mastocytosis the body has far too many mast cells.

In MCAD the number of mast cells is normal but they behave badly. The mast cells can suddenly degranulate without an allergic trigger.

Flop

Thanks Flop~

I think I must have this also as I went into anaphylaxias after having catsan with iodine. Now I can't have Iodine or iv with contrast with out being premedicated and it's been so long ago I forget what the I was suppose to do ahead of time. I don't see that doc and when I use to have allergic reactions to I would never know what. the docs in the er would write on my back and watch it swell up and bright red it was called something that started with and e.

Itch from lots of stuff. Take allegra 24/7 when your suppose to take it once in 24 hours, then flonase nasal spray, bennadryl for the break through itching.

Should I go to someone for a dx?

Come on my potsy pals give me advice so I sound smart at the docs this week.

My docs are learning from me or I should say from all of you.

Thanks~

BellaMia~

xxx's

If I only had a Brain/ bear with me today

new med today word finding is bad I know the word. I fill it in later.

[flop]

BellaMia - the reaction to iodine in CT contrast is usually a "proper" allergic reaction rather than an MCAD thing (but I could be wrong).

Red itchy wheals on your skin after someone had written on it or scratched it is called "dermographism".

Flop

[tinkerbella]

Flop,

Thank you

you saved me from driving myself nuts tonight.

Sometimes I just itch and have reactions from nothing at all it's crazy!

I'll Google it and read all about it. Then ask my PC what she thinks.

Oh my I haven't eaten, it's so hot here!

Got to at least get more fluids and let the dog out.

BellaMia~

[iheartcats]

Helpful people:

I still want to have the "Urine Test" to try to rule out MCAD (as I still get weird hives for no reason...but do have bad allergies of the pollen/dust mite/etc type which I know is different than MCAD).

What is this test called so I can fully ask for it correctly and try to less annoy my new PCP?

[firewatcher]

4 hour urinary methylhistamine test. There are VERY FEW labs that do this test. Vandy sent mine to Mayo. It has to be done immediately after a hard flushing episode to show anything.

[juliegee]

4 hour urinary methylhistamine test. There are VERY FEW labs that do this test. Vandy sent mine to Mayo. It has to be done immediately after a hard flushing episode to show anything.

Jennifer's right about that. It should be done within an hour or so of a suspected anaphylaxis episode to get an elevated number. (It's good to check serum tryptase at the same time- blood test.) Because it's so hard to catch, a normal test really doesn't "rule out" MCAD.

[iheartcats]

4 hour urinary methylhistamine test. There are VERY FEW labs that do this test. Vandy sent mine to Mayo. It has to be done immediately after a hard flushing episode to show anything.

OK. I'll bring it up and see what he says. If it's that involved I may have to wait until the Specialist I see in November.

Can you explain 'flushing' better if you don't mind? I keep reading 'flushing' - I assume and hope there are others on here who'd like clarification. It's on all the web sites but doesn't go into detail.

Right now I'm too warm and feel 'flushed' but that's normal. If i have a glass of wine I feel 'flushed.' But sometimes I'll get random hives and my chest feels flushed, but my face is fine. :/

[daisy]

I started getting hives caused by touch a few months ago. Anything I touched gave me huge itchy welps. Drove me bonkers! Other times I just itched all over for no reason. The autoimmune doc immediately diagnosed me with dermographism by doing a simple scratch test. He knew the connection between POTS and MCAD but said research is in early stages and there is a ways to go. I have been much better since starting Zyrtec. It's amazing to me how many of us suffer from these skin issues...just proves the point of the connection I think.

[juliegee]

Hi, I know a little about allergies and MCAD as I am trying to figure out what is going on with my own body at the moment.

IgE is the immunoglobulin involved in classical immediate hypersensitivity reactions (such as hay fever, peanut, bee sting etc) it is different to the pathways involved in other allergies such as contact dermatitis from washing powder.

People with severe immediate allergies would be expected to have high IgE levels. People with MCAD would normally have normal levels of IgE as MCAD isn't a proper allergy - it is a reaction like an allergy but without an allergic trigger. This can be complicated as some people have both immediate allergies and MCAD so their IgE would be high.

RAST testing will detect specific high IgE to a particular allergen. For example if you were highly allergic to peanuts your peanut specific IgE would be high even though your total IgE might not be much ablve normal. People with MCAD but no true allergies will have normal / negative RAST tests.

Pin pricks becoming itchy red spots - that is a classic dermographism response to the pressure on your skin. The pressure has caused mast cells to degranulate and release histamine which in turn causes the itchy wheals.

Sorry I can't answer your overall question but I hope these little bits of info make sense to you.

Flop

Couldn't have said it as well as Flop if I tried I'm DXed with MCAD. All of my RAST & skin testing is negative- even to known triggers. My IgE is normal. Yet, I have severe chronic allergy symptoms, like hives, upper respiratory stuff, throat & chest tightening, low BP, and even anaphylaxis. I have to take a daily regimen of H-1's and H-2's and more to keep it all at bay.

Julie

[juliegee]

MCAD = Mast Cell Activation Disorder.

It is a condition that has the same symptoms as severe allergies (including anaphylaxis). In an allergic reaction the allergen is recognised by the bodies immune system as a threat and chemical signals cause mast cells to degranulate (burst) and release histamine.

In Mastocytosis the body has far too many mast cells.

In MCAD the number of mast cells is normal but they behave badly. The mast cells can suddenly degranulate without an allergic trigger.

Flop

Thanks Flop~

I think I must have this also as I went into anaphylaxias after having catsan with iodine. Now I can't have Iodine or iv with contrast with out being premedicated and it's been so long ago I forget what the I was suppose to do ahead of time. I don't see that doc and when I use to have allergic reactions to I would never know what. the docs in the er would write on my back and watch it swell up and bright red it was called something that started with and e.

Itch from lots of stuff. Take allegra 24/7 when your suppose to take it once in 24 hours, then flonase nasal spray, bennadryl for the break through itching.

Should I go to someone for a dx?

Come on my potsy pals give me advice so I sound smart at the docs this week.

My docs are learning from me or I should say from all of you.

Thanks~

BellaMia~

xxx's

If I only had a Brain/ bear with me today

new med today word finding is bad I know the word. I fill it in later.

Dr. Marianna Castells, my masto doc, from Brigham and Womens, insists that her patients take pre-meds before all X-rays and CT scans, those with & without contrast dyes. For some reason, they get the mast cells all stirred up. Pre-meds include prednisone, benadryl or atarx, ranitidine, and singulair. Does this mean you have MCAD, BellaMia? Sounds like your mast cells got stirred up OR you have a real allergy to contrast dyes OR both? How's that for a non-answer? It's certainly worth exploring further. Do a search on this site of MCAD. It's been talked about here ad nauseum or check out the Mastocytosis Society website at: tmsforacure.org

Julie

[juliegee]

MCAD = Mast Cell Activation Disorder.

It is a condition that has the same symptoms as severe allergies (including anaphylaxis). In an allergic reaction the allergen is recognised by the bodies immune system as a threat and chemical signals cause mast cells to degranulate (burst) and release histamine.

In Mastocytosis the body has far too many mast cells.

In MCAD the number of mast cells is normal but they behave badly. The mast cells can suddenly degranulate without an allergic trigger.

Flop

Thanks Flop~

I think I must have this also as I went into anaphylaxias after having catsan with iodine. Now I can't have Iodine or iv with contrast with out being premedicated and it's been so long ago I forget what the I was suppose to do ahead of time. I don't see that doc and when I use to have allergic reactions to I would never know what. the docs in the er would write on my back and watch it swell up and bright red it was called something that started with and e.

Itch from lots of stuff. Take allegra 24/7 when your suppose to take it once in 24 hours, then flonase nasal spray, bennadryl for the break through itching.

Should I go to someone for a dx?

Come on my potsy pals give me advice so I sound smart at the docs this week.

My docs are learning from me or I should say from all of you.

Thanks~

BellaMia~

xxx's

If I only had a Brain/ bear with me today

new med today word finding is bad I know the word. I fill it in later.

Dr. Marianna Castells, my masto doc, from Brigham and Womens, insists that her patients take pre-meds before all X-rays and CT scans, those with & without contrast dyes. For some reason, they get the mast cells all stirred up. Pre-meds include prednisone, benadryl or atarx, ranitidine, and singulair. Does this mean you have MCAD, BellaMia? Sounds like your mast cells got stirred up OR you have a real allergy to contrast dyes OR both? How's that for a non-answer? It's certainly worth exploring further. Do a search on this site of MCAD. It's been talked about here ad nauseum or check out the Mastocytosis Society website at: tmsforacure.org

Julie

[juliegee]

MCAD = Mast Cell Activation Disorder.

It is a condition that has the same symptoms as severe allergies (including anaphylaxis). In an allergic reaction the allergen is recognised by the bodies immune system as a threat and chemical signals cause mast cells to degranulate (burst) and release histamine.

In Mastocytosis the body has far too many mast cells.

In MCAD the number of mast cells is normal but they behave badly. The mast cells can suddenly degranulate without an allergic trigger.

Flop

Thanks Flop~

I think I must have this also as I went into anaphylaxias after having catsan with iodine. Now I can't have Iodine or iv with contrast with out being premedicated and it's been so long ago I forget what the I was suppose to do ahead of time. I don't see that doc and when I use to have allergic reactions to I would never know what. the docs in the er would write on my back and watch it swell up and bright red it was called something that started with and e.

Itch from lots of stuff. Take allegra 24/7 when your suppose to take it once in 24 hours, then flonase nasal spray, bennadryl for the break through itching.

Should I go to someone for a dx?

Come on my potsy pals give me advice so I sound smart at the docs this week.

My docs are learning from me or I should say from all of you.

Thanks~

BellaMia~

xxx's

If I only had a Brain/ bear with me today

new med today word finding is bad I know the word. I fill it in later.

Dr. Marianna Castells, my masto doc, from Brigham and Womens, insists that her patients take pre-meds before all X-rays and CT scans, those with & without contrast dyes. For some reason, they get the mast cells all stirred up. Pre-meds include prednisone, benadryl or atarx, ranitidine, and singulair. Does this mean you have MCAD, BellaMia? Sounds like your mast cells got stirred up OR you have a real allergy to contrast dyes OR both? How's that for a non-answer? It's certainly worth exploring further. Do a search on this site of MCAD. It's been talked about here ad nauseum or check out the Mastocytosis Society website at: tmsforacure.org

Julie

[firewatcher]

4 hour urinary methylhistamine test. There are VERY FEW labs that do this test. Vandy sent mine to Mayo. It has to be done immediately after a hard flushing episode to show anything.

OK. I'll bring it up and see what he says. If it's that involved I may have to wait until the Specialist I see in November.

Can you explain 'flushing' better if you don't mind? I keep reading 'flushing' - I assume and hope there are others on here who'd like clarification. It's on all the web sites but doesn't go into detail.

Right now I'm too warm and feel 'flushed' but that's normal. If i have a glass of wine I feel 'flushed.' But sometimes I'll get random hives and my chest feels flushed, but my face is fine. :/

Flushing is a reddening of the skin like a blush, but worse. For me it looks like a really bad sunburn and feels like there is a cloud of hot air around my head. I flush from my ears and face down to the chest.

[tinkerbella]

Julie,

I can't believe it that is my doctor!!!! I haven't been to see her in 12 + years because I have been so sick....... and she back then I was thought to have asthma or her associate dx me at the time. I couln't get in with her and last time and so my PC sent me to a plummy care intensive care specialisy. I loved her. I was on atterax for years but did not want to be on something sedating. I still had terrible break through itching that even bennydryl won't stop. Funny thing is at times it is my nose and I actually will rub it raw or where ever I itch. I went into a terrible reaction to testing to lidocaine in her office. It was pretty scary...

I'm going to make an appointment and look into this. Thank you for all your help as I'm itching like crazy right now with the heart monitor on. I just might rip it off in my sleep the way I'm feeling. LOL!

I see her in the Brookline office, do you come out this way just to see her at the hospital? I'm having a mental block on the male partner who dxed me with asthma and was baffeled when I ended up in the er that night. I remember I felt like he thought it was all in my head. Now something weird is happening in the sun I don't know if it's rash or blood pooling. I have a hard time getting to the docs due to transportation issues., still working on this one.

I knew I needed to go see her last week when I had my cortisone shot and no one knew what to give me and I said to myself I need to get back to Dr. Castells... singular made me really extra tachy.... thanks again, gotta go take something right now for all this itching.

Blessings,

BellaMia~

Thanks,

BellaMia

[iheartcats]

So glad I resurfaced this topic. Good news for once, Bella! I needed a positive this week.

Let us know how things go and what they test you for.

You get rashes in the sun? Very red/flushing like Flop described?

Flop - I have very British/Irish skin and it likes to get red for a lot of reasons. LOL

[tinkerbella]

Nice work all. Feel like I'm on HOUSE tonight as I still itch!

1st I'm Irish/English Dad/Mom

2nd I've always been a kid who always got embarresed easily and people knew it and made me do it all the time to tease me. (anyone else )

3rd I have dimples anyone else have this defect? Just wondering as I met a new Posty who had them and it made me think.

4th I have mottled skin on my chest always looks rashey to me.

5th Now just started with rashes and need to lrosasea

well, I can't think straight as it's so hot and late.

I'll check back later on.

I'll check out that link many. many. thanks.

~bellaMia~

[juliegee]

Julie,

I can't believe it that is my doctor!!!! I haven't been to see her in 12 + years because I have been so sick....... and she back then I was thought to have asthma or her associate dx me at the time. I couln't get in with her and last time and so my PC sent me to a plummy care intensive care specialisy. I loved her. I was on atterax for years but did not want to be on something sedating. I still had terrible break through itching that even bennydryl won't stop. Funny thing is at times it is my nose and I actually will rub it raw or where ever I itch. I went into a terrible reaction to testing to lidocaine in her office. It was pretty scary...

I'm going to make an appointment and look into this. Thank you for all your help as I'm itching like crazy right now with the heart monitor on. I just might rip it off in my sleep the way I'm feeling. LOL!

I see her in the Brookline office, do you come out this way just to see her at the hospital? I'm having a mental block on the male partner who dxed me with asthma and was baffeled when I ended up in the er that night. I remember I felt like he thought it was all in my head. Now something weird is happening in the sun I don't know if it's rash or blood pooling. I have a hard time getting to the docs due to transportation issues., still working on this one.

I knew I needed to go see her last week when I had my cortisone shot and no one knew what to give me and I said to myself I need to get back to Dr. Castells... singular made me really extra tachy.... thanks again, gotta go take something right now for all this itching.

Blessings,

BellaMia~

Thanks,

BellaMia

Wow, small world indeed! Yes, I visited Dr, Castells in Brookline. I was referred to her as she is one of few masto researchers in the country and a huge advocate for patients with MCAD. Your symptoms must have been pretty awful to get to Dr. Castells.....If possible, I would get back in with her and ask her to evaluate you for MCAD. You are so fortunate to be near her. I hate taking so many drugs too, BUT if you have MCAD they will become a way of life for you It's really the only way to stay safe and keep symptoms at bay. I take atarax nightly and do not experience a sedating effect...wish I did Let me know what you find out. You will be in great hands.

Julie

[tinkerbella]

Julie,

I still can't believe this..... I know they didn't know what to make of me back then....And does she know all about POTS? I'm going as I've covered in a rash from sun exposure. Then from my heart monitor each time I get a rash and last night it was the worst ever. I look like I have the measles. A week ago I had xrays for a cortizone shot and just before that a cat scan and x rays for near bowel ostruction.

So people get both... hummmmmm.... wow. Do you have to come back to see her again or does she micro manage you by phone. She is that nice, I bet she would... Thanks for everything, as soon as I workout some transportation I'll set up an appointment.

Blessings~

BellaMia~

[juliegee]

Julie,

I still can't believe this..... I know they didn't know what to make of me back then....And does she know all about POTS? I'm going as I've covered in a rash from sun exposure. Then from my heart monitor each time I get a rash and last night it was the worst ever. I look like I have the measles. A week ago I had xrays for a cortizone shot and just before that a cat scan and x rays for near bowel ostruction.

So people get both... hummmmmm.... wow. Do you have to come back to see her again or does she micro manage you by phone. She is that nice, I bet she would... Thanks for everything, as soon as I workout some transportation I'll set up an appointment.

Blessings~

BellaMia~

We have many similarities, Bella Mia! I've had that whole body rash, like measles before. It looks like a sunburn on me, but I get it in the winter. Around that same time, I'd also been hospitalized for bowel obstructions. (Miralax is my lifelong best friend :-) I didn't really go into, "POTS" (per se) with Dr. Castells. I told her I had some autonomic abnormalities: high HR when I stand and my BP sometimes drops out. I let her know that my Mom, Grandmother, son and 2 brothers also experience this. My medical report read: " long familial history of autonomic irregularities..." They go hand-in-hand with mast cell issues. She's well aware of all of that. Best of luck. I hope you get a DX and good treatment plan soon. Please let us know how you are doing.

Oh, I almost forget- I'm supposed to check in with Dr. Castells annually by phone. She's available for me in person if I feel the need to make the trip back to Boston. I have a great local allergist here in GA, formerly from Mayo. He's very supportive and helpfull- Thank goodness!

Hugs-

Julie

[tinkerbella]

Julie,

I just got home from my infusion, this week i couldn't breathe after lunch and went to the bathroom. i had a bad gripping pain in the left side breathing they had to run a bnp. i was let go as there was no weezing or rale sounds and i always show oxygen level 99, but I can't breath very tachy. dr will call later if bnp is showing anything. i think i have new issues going now since the heat wave. I need to get to my pc. i really WISH i had A CAR AGAIN...... not being able to just jump in a car and drive to my docs is nerve racking.....

THERE IS SO MUCH PRESSURE INSIDE MY HEAD, left eye, and EARS tonight...............i could scream, but i won't....

Thanks for your support again....

(((((((hugs right back to you)))))))))

bellamia~

[juliegee]

Ajw4055-

Have you had your appt? How'd it go? Did you learn anything new? Please forgive our "hijacking" of this thread...

BellaMia, I don't know what you're talking about....What kind of infusion? What's a bnp? I hate that your symptoms are so awful. Have you figured things out? You're in my prayers.

Julie