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I'd be interested to know the type of onset experienced by the otherwise relatively healthy 'idiopathic anaphylaxis' group. Would seem neat and tidy if they were usually acute onset vs people like us that gradually step up as our related illnesses trigger more and more.

Interesting to briefly hear their thoughts on sub-types of MCAS at 19:40. Having spent some time on MCAS patient groups its quite apparent that there is a severe and recurrent anaphylaxis group that lead otherwise normal lives between reactions, as well as a patient group that is more...

Unfortunately not. The good news is that in some cases you can throw some quite safe (some even OTC) meds at it and usually see some improvement. It's a bit more problematic if it's got to the point where you can't tolerate those, but in theory that's where you'd get hospital driven care...

Hi @Esther12, Tryptase can be done fairly routinely on NHS I believe. Unfortunately, like most of the other MCAS tests, it's reliant on a sample being taken at the time of a reaction and even then is not that reliable - many MCAS patients won't show abnormal levels. N-Methyl Histamine can be...

Hi @andypants, I wouldn't lead with anything non-specific like cognitive fog, fatigue or headache as a primary complaint. Don't even bother bringing up CFS/ME unless you have to. Any symptoms you might have like visual disturbance, muscle weakness/burning, tingling, numbness etc. is probably...

Similar to other reports, my early symptoms were dominated with: - Very frequent & severe migraine with cyclic vomiting - Calf ache, worse at night and improving with sleep, even just short naps - Unrestorative sleep - Sore throats & swollen/red lymph nodes, predominantly armpits - Night sweats...

I use the screen clipping tool that is part of Microsoft Office OneNote - not sure if you have that or if it provides same functionality on Mac. This might help though: https://support.apple.com/en-gb/HT201361 Ryan

Hi @Gingergrrl, I took a screengrab of the page you referred to, it is useful to see the neuronal & systemic categories. Ryan

Hi @Gingergrrl, Good summary. Did you watch the other video too? I think it may be even more relevant to you. Its obviously only one study but I found the distribution of antibodies in autoimmune dysautonomia phenotype to be quite surprising! I believe the Autoimmune dysautonomia panel...

Oh, that reminds me, one possible cause of elevated B12 I did find was attributed to gastrointestinal bacterial overgrowth. I have had confirmed SIBO/dysbiosis, so perhaps that is the simple answer in my case.

MMA never got done because the NHS lab had a high (aka 'normal' as far as they are concerned) serum test on record. I should really follow it up as I've had numbness, tingling etc. in one foot for a long time.

@Scarecrow You can self refer and have the tests done by MediChecks in the UK. MMA and homocysteine are £100 each. Serum B12 & Active B12 together are £60. A blood draw was something like £19 at my local hospital last time I did it. 20% off all tests at the moment...black Friday is everywhere...

NHS lab were willing to do an MMA test for me, recommended by private endo, my GPs had never heard of it. But it got bounced back by lab because I had a normal/high serum B12 on record. GP wasn't willing to fight for me and I couldn't afford to get the endo involved so it never happened. FWIW...

Hi all, Curious to know if anyone here has Zoster sine herpete (Shingles without a rash)? I'm currently waiting for a neurologist to tick-off less invasive investigations before preceding to a lumbar puncture to look for herpes virus in cerebral spinal fluid. I believe valganciclovir was...

I can relate to this but PEM and the illness were still there, just so mild that it took several days of high exertion to trigger it. During first remission I could go all day at work, play sports, go rock climbing, that sort of thing - only when I tried to do these things 2 or 3 days running...

I had taken remission to mean partial remission in this scenario. I thought if the illness was completely gone it was referred to as complete remission. Important point though!

I would categorise the core issue of PEM as relapsing-remitting with fairly consistent highs and lows of severity. But if we're talking about overall QoL I would say secondary-progressive, as I have picked up other ailments along the way. Whether these are secondary issues or reflect a...

@Valentijn was that 11.9 score your VO2max or AT? Whichever, I hope you've improved a bit since, that's really harsh :( If VO2Max I really wonder how useful this test becomes, because you must be over your AT just sitting on the bike. Pretty sure I was in similar situation in my first test...

Yeah, 80% VO2max appears to be the agreed cut off for 'normal' in guidelines. But unless there's a really bleeding obvious primary limitation it seems like a low score just puts docs back into "meh, could be anything" mode. Which is even more frustrating when you learn that people with...

Yeah, same here, ~50% of predicted VO2max, crazy high RER. My AT was low enough that I would've exceeded it walking to the lab. My heart rate didn't get over 150bpm that day, I was on a very low dose of bisoprolol and it was doing me no good it seems. I repeated it 2x weeks later off bisoprolol...