anaphylaxing

Thanks for the encouragement futurehope!

Agreed. PPIs won't have same histamine blocking benefit. Though they're great for other causes of GERD/GI upset and some ppl with mast cell issues/IA seem to need H2 blockers and PPIs to control the crazy mast cell production. I'm just on Zantac at the moment.

Things have finally settled enough for me to be able to walk, hike and bike. I am SOOo ecstatic! Tried a few steps of jogging, but going to build more up on these and see how it goes first. Might get back to jogging yet! Fingers crossed.

It's been a slog of days/months where I could barely get out of bed or walk. With minute progress along the way, but we can never give up who knows what great things are ahead!

I definitely have similar symptoms to you. Have you ever tried antihistamines (H1 or 2) have they helped? Do you flush easily? Important to stay hydrated. Reasonable to have your doc check a serum tryptase to help rule out mastocytosis.

Mine all exploded after an anaphylactic reaction to contrast. Now my most bothersome symptom is reactions to all scents.

More deets on my blog if curious...

My face is almost always flushed from various MCAS triggers but I dont have rosacea. I agree with seeing a mast cell doc to make sure it's one vs the other.

Would be good to have a holter. Mine ranges from 30-150 bpm. Can be normal for it to be slow briefly if you are asymptomatic. If chest pain, I would go in to hosp.

florinef can drive down your serum K quickly, best to check it if you just started it.

Diagnosing a Chiari malformation does not require contrast administration in my opinion. If I were you I would have a non-contrast MRI. They can examine your whole brain but just don't administer gadolinium. MRI also avoids the radiation of CT and is higher anatomic detail.

What are they looking for other than CM? Why are they administering contrast? I would just decline the contrast.

A Sagittal T1 sequence is the most useful for Chiari and almost MRI performed includes this sequence.

Discuss it with your doc or radiologist.

Oh your son sounds very adult like! I wouldn't think Reyes would be a big concern at 17, but who knows!

I get tinnitus as part of my MCAS symptoms. Started on no meds. Bizarro. I also had easy bruising before but I have joint hypermobility, think skin etc.

I've been tempted to try aspirin. I hope it goes well for him . Let us know!

check out the mastocytosis society website

http://www.tmsforacure.org/medical_board.php for a doc list

though if you don't have run of the mill mastocytosis then not all listed are that helpful and Boston or SC are the way to go at the present time

good luck and keep us posted

That would be great if you could see one of Lyn's docs as a first step so they could rule some things out. Or if you have an open minded doc you could ask them to investigate you for mast cell disease and see how they respond. There are lots of good articles they could review. If they were to contact a mast cell disease expert, many of them are kind and willing to help other docs remotely. Then if necessary you could travel to one of them if you're well enough!

Big things would be to check your serum tryptase, IgE, could do urine N methylhistamine and prostaglandin---though if these tests are not handled properly the results can be false. Also ruling out phreochromocytoma and carcinoid is usually necessary. If you're tryptase is high, they might need to do a bone marrow biopsy. If you have skin lesions would be good to have a mast cell doc look at them to see if it fits with anything, needs more investigation, or could save you other testing

Dr Afrin that Lyn has seen is a hematologist and has a wonderful reputation. If you could see either an allergist or hematologist familiar with mast cell disease or willing to liaise that would be great

Have you ever noticed other triggers like stress, food, drugs, smells? Some people trying to sort things out try a low histamine diet. I'm currently trying one.

Have you ever taken an antihistamine to see if it would help? The first line treatment for mast cell disease is antihistamines that block the H1 receptor, H2 blockers like zantac, and mast cell stabilizers

sorry if I'm repeating myself; can't recall what I posted before

Michelle, where do you live? Finding a doctor familiar with mast cell diseases other than mastocytosis can be a huge challenge. Hopefully yours can check for mastocytosis. After that you might have to involve a mast cell disease expert like those in Boston.

I get all kinds of wacky rashes

It's a combo of clinical, labs, and excluding other diseases. Best is to see an allergist familiar with mast cell disease which can be found on the mastocytosis society website. I think the best are in Boston and South Carolina if you can travel.

Blood test serum tryptase, plasma heparin. Urine 24 hour N methylhistamine and prostaglandin D2

Symptoms include flushing, itching, dermatographism, "allergic reactions," GI upset (including GERD), intolerance to heat, tachycardia etc

Many of us with MCAS also have POTS, some of us have all the symptoms but no proven labs but are treated anyway with antihistamines and mast cell stabilizers if they help

I hope it helps him Christy!

Agree about aspirin, it inactivates a COX II enzyme which is required for prostaglandin synthesis.

But some of us mast cell people will have severe negative reactions to aspirin. Let us know how your son is doing. It is good to have results to know which mediators to target!

I wonder about the ASA and the known elevated heparin....most ppl take ASA for the antiplatelet effect to help prevent heart attack. I wonder if those of us with elevated heparin are at higher risk of bleeding when also on ASA, or because of our messed up PGs does it not have that effect. Hmmmm

I've been tempted to trial aspirin at home myself but have been too concerned about and adverse reactions and my docs mentioned it should be done in hospital if I try it.

Did he say if your son's risk of Reye's syndrome from aspirin is too small to be relevant given his MCAS?

Feel better soon Kayla!

Any chance certain foods could be the problem? I run into that. smoothies or simple cooked mashed foods seemed easier on my system. But i have a mast cell activation/trigger component to my POTS not sure if you have ruled that out yet or not?

Good luck!

Michelle

Sorry if you've already mentioned this elsewhere, but have you looked into mast cell disease? Heat and skin manifestations following it can be a manifestation. Mastocytosis and MCAS would be important things to exclude, or if they found you were affected, there might be simple treatments that would improve your symptoms.

Since being sick with ?MCAS I really can't tolerate much heat or sun at all. I never used to like it, but am much worse now! I also currently have reactions to scents, stress, and some foods. I've had variable POTS and all of my symptoms are extremely variable one month to the next

Hope you feel better

I have ?EDS3 and my whole female family has extremely dense tissue. Also thin skin and readily visible veins. Occasionally these can get thrombosed and become even more obvious. Though, there are many women with dense tissue and no EDS; it is very common.

It is good you are starting screening early, but can I ask, are they doing ultrasound or MRI with you mammo screening? If your tissue is dense, mammography has low sensitivity and it is prudent to at least have a bilateral breast ultrasound as well. Often, before 40, some recommend yearly breast ultrasounds and saving the mammo for when the ultrasound's abnormal or every second year until 40 to save some radiation. MRI is also an option. Things to discuss with your doc; maybe you already have

Do you have a family history of breast cancer at all?

Fibrocystic breast tissue is found in more than half of normal women, so I would try not to be concerned about it. That being said, if you ever feel a new lump or a change, you should always be assessed by your doctor. I do realize, like you said, with lumpy tissue, it's hard to pick out new lumps! So, good that you are getting screening.

Also, the younger you are the denser your breasts will be. You might find this changes with age.

I take it for reaction flares 25-20 mg. It used to make things float and I felt sleepy but I don't notice anything now. It an H1 antihistamine that crosses the blood brain barrier and is used, or moreso was, used in higher doses for anxiety.

I sometimes get it with standing and exertion, other times as part of my reactions

Didn't have a great experience in MN

Mine are like that too. I keep my legs up whenever I can, keep warm and keep moving like you said. take breaks and walk around or do calf raises

Way to go Jangle! Did you have a reactive/allergic component along with your POTS at all?

I'm working back up with exercise and find it flares my allergy/MCAS symptoms but am still doing it.

I care and am rooting for you!!!

Are you on an H1/H2 blocker and mast cell stabilizer? Your poor system needs a break! Not that they use them routinely or they're good commonly but did you ever see improvement with Epi and steroids?

Have you tried an elimination diet?

Just ignore me if you're too tired. Just want you to feel better.

Oh wow Linda, were those experts from Boston? As I'm sure you know, varying masto specialists have varying experience with MCAS

Sometimes you have to go with what you feel and what works no matter what docs are telling you. If you have symptoms that respond to antihistamines my guess would be it's a reaction and I would start looking for triggers/try an elimination diet. If the claritin helps, stick with it for now I would think

But you know your body best!

Keep us posted

Oh I so hear you on the medical stress making things worse. I remember feeling whatever is wrong with me, I think I'll improve more if I stay AWAY from doctors rather than have more tests. If you are still worried I don't think a follow up urine or serum test is unreasonable just make sure they tell you what medications or foods to avoid that might interfere with the test. I learned that the hard way

I just now read all of you scan interpretation debacle. Interpretation can be so subjective as you've experienced creating the error margin of false positives and negatives. So hard to find black and white facts or definites to hold on to when suffering from complicated illnesses.

I hope you start to feel better. Wishing you the best!

I see you have some degree of asthma from your meds?

Have you looked into mast cell activation syndrome? I am doing an elimination diet of sorts to help identify triggers that cause my systems. In addition to foods, stress, heat, and strong smells make me symptomatic.

I try to drink lots of water and get lots of sleep too.