Good luck with that Vic. So does that mean your anaphylactic shock wasn’t to do with what you ate or the shots after all? Or are they still implicated? x
Vic, I am sorry to hear that this might be systemic mastocytosis, if it is, I hope its the milder form and can be managed easily. I hadnt heard of this until now, it seems that it is quite rare.
Hope the bone marrow biopsy goes well. Let us know how it goes.
Sending good vibes your way.
Best Wishes
Christine x
Thanks Christine - I too am hoping it is managable (if I have it - obviously I hope it’s some random nothingness that clears up all on its own). Also that I can get sedation or pain relief during the biopsy. A nurse friend familiar with the procedure has said although brief it’s excruciating 
Brenda, when I went to have the skin tests we couldn’t go ahead with it as I have dermatographia (literally ‘skin writing’) meaning my skin reacts to any scratching so they wouldn’t have been able to tell if I was reacting to the scratch or the substance. Apparantly the dermatographia is implicated in/connected to the mastocytosis as well (from memory but my memory may be unreliable here - so much to take in). However, given the persistently elevated serum tryptase, my ongoing symptoms and the failure of the blood tests to show any allergies it’s looking more likely that the problem is underlying (eg systemic mastocytosis) rather than an allergic reaction.
Really sorry to hear this Vic. Hope you get to the bottom of it all very soon. I had never heard of systemic mastocytosis so looked it up on the NHS website, and noticed on there that there’s several clinical trials in the UK for this, so hopefully if that turns out to be what you have there will be some trials in Australia too?
Keep us all updated on when you are having your tests and also the results. Take care.
Victoria
Do you know yet when your bone marrow test is? Hope you can get some pain relief while it is being done and that the test will show up something that can be managed. It’s an added stress which you definitely don’t need.
Barb
Thanks Beech and Barb for your thoughts.
I’d never heard of systemic mastocytosis either, apparently it’s rare. Great! :roll: .
I’ll find out tomorrow when the bone marrow biopsy is. I have a horrible feeling that I won’t be able to have much in the way of anaesthesia as it may trigger anaphylaxis but I will be begging/pleading/offering huge amounts of cash to have sedation so I neither feel it nor remember it. Even the specialist told me sadly that “I’m afraid it will hurt” .
Absolutely I do not need this stress. Plus, my workplace is horrible and stressful right now and that actually ramps up my symptoms of whatever this is (flushing, stomach cramps, wheezing, headaches etc etc). Vicious circle!!
— Begin quote from “Victoria”
I just hope that if I do have systemic mastocytosis I don’t have the ‘aggressive’ kind as I’ll be dead in 2 - 4 years if I do .
— End quote
Jeez Vic, what a dreadful worry Really hope it turns out to not be that at all, and even if it is you have the less aggressive sort.
Re work, could you take a bit of time off to get your tests all done and know what you are facing? It sounds like the last thing you need to be putting yourself into a stressful situation at work as well as being so anxious about your health.
— Begin quote from “beechleaf”
— Begin quote from “Victoria”
I just hope that if I do have systemic mastocytosis I don’t have the ‘aggressive’ kind as I’ll be dead in 2 - 4 years if I do .
— End quote
Jeez Vic, what a dreadful worry Really hope it turns out to not be that at all, and even if it is you have the less aggressive sort.
Re work, could you take a bit of time off to get your tests all done and know what you are facing? It sounds like the last thing you need to be putting yourself into a stressful situation at work as well as being so anxious about your health.
— End quote
Some time off right now would be ideal, but very difficult with the work commitments I have over the next few weeks. I’d also like to hang on to my sick leave as I have a feeling I’m going to be needing it .
Thanks for thinking of me.
SH*T Vic - sorry for not posting sooner but I’ve only just got myself up and running with a new computer. Really hope the biopsy brings good news and sedation - although probably in the reverse order!
Gabrielle
— Begin quote from “lorcalon”
SH*T Vic - sorry for not posting sooner but I’ve only just got myself up and running with a new computer. Really hope the biopsy brings good news and sedation - although probably in the reverse order!
Gabrielle
— End quote
Thanks Gabrielle. Don’t know when the cursed biopsy will be. When I rang to tee it up, the receptionist said the hematologist doesn’t actually do biopsies! So I have a consultation appointment with the hematologist booked for three weeks’ time but have no idea what for. I emailed her asking to clarify why the immunologist has asked me to see her ASAP and if she’s not doing the biopsy who is…? No response yet. And the immunologist is now overseas for six weeks so I can’t contact him. So I’m adrift on an ocean of confusion
I suppose the only positive is if they thought I had the leukemia version (two months to live) or the aggressive version (2-4 years) I assume they’d have had the decency to call me…
just what you need, a bit more stress… :evil:
— Begin quote from “lorcalon”
just what you need, a bit more stress… :evil:
— End quote
Yep.
Plus, persistently elevated serum tryptase (which I have) means I’m at constant high risk of further anaphylaxis. More stress!
Well, things are moving.
Hematologist got in contact and brought my appointment forward to today. Spent about an hour with her. She too is thinking mastocytosis but there’s a few more steps to diagnosis. More bloods today. Full ‘skeletal survey’ X Rays and CT on Thursday to look for bone lesions and any incursion into organs, and bone marrow biopsy next week. Then back to see the hematologist in three weeks with all the results for a diagnosis and prognosis (hopefully the indolent rather than aggressive version).
She agreed it’s a confounding nuisance when many of the symptoms overlap with migraine and sympathised that not only is the condition very rare but the symptoms already seem to be ‘intruding’ on my quality of life. Her advice - don’t plan any overseas holidays or make any major life decisions. Looks like a fairly long road ahead.
Glad to hear things are moving and that you’ll have some definitive answers soon. It must be a nightmare hanging around waiting for test results etc. I must say you seem to have dealt with it all remarkably well. At least that’s how it comes across anyway. Hope the rest of the tests go well and wishing for the best possible outcome for you.
Brenda
Thanks Brenda,
Yes, the endless tests and waiting around for a diagnosis, let alone a prognosis is a protracted kind of agony. I guess I’m doing OK, but there have been a few melt downs.
Vic
An update -
I’ve had full skeletal survey X rays, multiple blood tests and last week the bone marrow biopsy (which was nowhere near as bad as I’d feared). Don’t get results of all of the above until next week although there seems to be a general consensus that systemic mastocytosis is what I have.
It is not nice - every day I have any or all of the following: stomach cramps, diarrohea, flushing, wheezing, heart palpitations, light headedness, vertigo and general feeling of unwellness.
Hey Vic – sorry to hear all of this. That’s the last thing you need with migraine as well.
So has all of this been suddenly kicked off from the vaccine?
S
Ho hum - still no answers.
Yesterday had my appointment with the hematologist where I was meant to get a diagnosis (all indications were systemic mastocytosis) and then a prognosis and treatment plan. However, my bone marrow biopsy is normal! The good news is this means I don’t have leukemia but the bad news is the hematologist is just about out of ideas. The only other thing she can think of is something call C1 esterase deficiency aka hereditary or acquired angiodema, but she doesn’t really think it’s that as I have had hives and it doesn’t present with hives.
She’s going to hand me back to the immunologist, but I think I need the Dr House team :roll: This is getting really tiresome.
I was about to say – can you make an appt with House? They should put you on the show. Maybe it was just some freak thing that happened to you, never to happen again.
I was about to say – can you make an appt with House? They should put you on the show. Maybe it was just some freak thing that happened to you, never to happen again.