Is it Sjogens or is Mast Cell Disease

[LauraZ]

I was diagnosed with Sjogens 6 years ago, after literally waking up to a mouth full of cavities. Upon xray, the dentist said they started at the roots. He did a biopsy and it came back as Sjogens.

All my life i have had severe life threatening allergic reaction to wasp venom. Then a year ago i went into anaphylaxis shock after eating a peach, i was admited to intensive care due to reoccurring ansphylasix. During that hospital stay, the team of doctors ask if i was allergic to anything else that severely. My answer if its a medication im probably allergic, soap, shampoo, mushrooms just about anything even Benadryl and they give you this for an allergic reaction. Want to guess how they found that allergy. Yep another bee sting, and now we add steroids to the list.

If there is Anyone in here, with these type of allergies, i was even diagnosed wit Myasthenia Gravis, and MS from a muscle biopsy. If your the one in a million who crazy crap medically stuff hapens too. Please send me a msg. The was to get tested for the Rare Disease Mastocytosis is usually a bone marrow test, unless like me you present symptoms to a one in a millon doctors who have actually seen a case of Mastocytosis.

Just finding out what was wrong after all these years was awesome. I even was sent to the Mayo Clinic Twice, they just said something is wrong but we cant find it. That tells you how rare this is. And now i am suffering from anemia to top all of that off. My cardiologist said Well Now We Know, blood pressure so uncontrollably they were afraid i would have a stroke. But Mastocytosis put All the pieces together, finally i had an answer.

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Heck that’s a shocking story LauraZ. So can you have Sjögren’s and MCAS/ Mastocytosis or was SS definitely a misdiagnosis?

A friend’s partner has Mastocytosis - I haven’t met him but apparently he’s now on the low FodMap diet and it’s helping. I’m assuming you have looked into alternatives and are probably already on a low/ no histamine diet? If not this would be my next chosen path.

I think I may have MCAD rather than full blown Mastocytosis like yours. My late mum had a bee sting allergy and carried adrenalin shot around but only got stung the once as a child, almost died. I’ve only ever once been stung by a wasp and apparently bee stings are quite different in their allergenic properties - but I’ve never been stung yet by one yet. In the UK they are less likely to sting people unless attacked or trod on as varieties are mostly very peaceful, unlike wasps. Nonetheless I’m vigilant. Never walk barefoot.

I’ve had slow anaphylaxis 3 times now. Twice over the past 7 years to drugs and once to a kitten we adopted - this led to emergency treatment. I’ve had allergies all my life to varying degrees of severity including pancreatitis, follicular rashes mistaken for scurvy and lots of facial rashes and alopecia areata. However most of these have only been moderately severe so far - often to chemicals in shampoo or in washing powder, house dust, some pollen, animal fur etc. Usually some steroids have helped. I have Hashimoto’s and Sjögren’s and was previously misdiagnosed with RA so definitely an autoimmuner.

I’m off to see my GP in an hour about the new med, Propranalol, she’s got me on for tremors and BP swings. It says don’t take if you are prone to severe allergies as it may mean adrenalin doesn’t have the required effect so I’m going to double check. The fatigue seems much worse and I have a rash across my face.

I was told last year by a Sjögren’s expert that people with SS are often highly allergic too so this is why I ask about you having both. Yours sounds nightmarishly severe but I’m really glad you know what you’re up against now at least x