Vlogging With Cold Urticaria: I Finally Saw An Allergist! (With Pictures)
19
February

By Adem Lewis / in , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , /


And then she said “well some people do react
to water” and um… [upbeat intro music] I finally have an allergist appointment. [gasp]
I’ve only been waiting for 11 months. I shall read it out to you as has apparently become
my thing when I get these things. Dear Mr Max Fisher… Good start. Here are the details
of your appointment at hospital, your consultant, clinic, clinic location, date and time- Wednesday
the 18th of December, 8.30 in the morning. Please read points 1-4 carefully as well as
any instructions overleaf, and any other sheets enclosed- there were none. Number 1, if you
need to cancel or change your appointment, ring that number, getting here… It’s all
the same as my audiology letters really. I’ll also put a card to that up here. If a medical
condition prevents you from using public transport please ring the following non emergency transport
providers a few days before your appointment- yeah yeah yeah. When you come to your appointment
please bring this letter, a list of your medications including how much you take and how often,
glasses or hearing aids that you use, your up to date mobile number. It is very important
that you read the instructions below as they relate to your appointment on Wednesday the
18th of December at 8.30. URINE SAMPLE, in big capital letters. It is important that
you bring a sample of urine in a small clean bottle with you. If you are attending an adult allergy
appointment, allergy skin tests may be undertaken when you attend clinic, consequently it’s
important that you do not take antihistamine tablets- for example Telfast, Zyrtek, Xyzal,
Piriton, Claritin, and Neo-Claritin 72 hours prior to the clinic visit. I’ll take you with
me, as always. I got another letter from my allergist, and it says ‘Dear Mr Max Fisher’
which is always a brilliant start, ‘We are sorry that we have to change your appointment
which was on the 18th of December 2019 at 8.30 at this hospital. Your new appointment
is Wednesday the 15th of January. Hello, it’s me again, I went downstairs to a letter this
morning that looked especially NHS-like, they’ve rearranged my appointment again. March the
4th, at 11.30. Will I ever get to an allergist clinic, who knows. Dear Mr Max Fisher, we
are sorry to have to cancel your appointment. Your new appointment is on the 17th of February
at 8.45 in the immunology clinic. Tomorrow, I finally get to see my allergy specialist.
I am on my sofa because thank you amitriptyline, I am not a morning person. My appointment
is at 8.45 in the morning, so I will be on my bike at 7.30 in the morning, in the cold,
without my antihistamines. But at least that way maybe the allergy specialist or immunologist
or whoever it is I’m seeing might get to witness what I live with. Wish me luck. Just finished
my appointment, still allergic to cold. We knew that, I could’ve told you that, um, but
I’ve picked up some more. Skin tests for grass pollen and tree pollen, negative.. Yesss.
Um, and then dust which came up bigger than my positive control so confirms that yes I
am indeed allergic to dust as well. We were discussing Cold Urticaria and I was like wet
cold is always worse than dry cold, and then she said well some people do react to water
and um, apparently so do I. Now I know why wet cold is always worse than dry cold. Bodies
are weird. I’m now back on my bike, I’m gonna go into town, I’m gonna get coffee because
I haven’t had my coffee yet… Onwards. Hello, OK I am back home as you can see. To sum up…
Been off antihistamines since Thursday, then I cycled in this morning because road works
and traffic and it was actually the fastest way to get there, I beat the doctor there,
she called me in, we had a discussion about Cold Urticaria, symptoms of that, symptoms
of food allergies, and things that I’m not sure about and allergies that I want to test
for… After we’d had the discussion we did a- I say we, she performed a skin prick test
on me. I will put a photo on screen now… It doesn’t look like much, let me explain.
So for a long time, my hives have been small. The way my body responds to histamine isn’t
necessarily the typical way that you would see urticaria, which makes photos of my reactions
look ‘less legitimate’ or questionable to some people, but we spoke about that today because-
because in my skin prick test, the positive control which was on the top right of the
photo- you might want to skip back because I- the software I use I can’t just put the
picture on next to me. Positive control quite small, but enough of a positive that she was
happy to continue with the test and interpret the results based on that. Another reason
why she was OK with that is because I had bought in lots of photos of different hives
in different situations so after the shower, being outside, putting ice on me, that sort
of thing, and the hive that I got for my positive control matched the ones in the pictures.
We tested for dust mites, and grass pollen, and tree pollen. Both grass pollen and tree
pollen came up negative, I don’t have hay fever, I kind of knew that but she wanted
to test anyway, and dust mites. So my dust mite hives came up bigger than the positive
control, which indicates a- it’s quite likely that I am allergic to dust mites, or dust.
There was two different types, I forgot to check which types she tested for, but there’s
two of them, and it’s dust mites, and they are the middle- the middle two, like there
and there. You can kind of see the positives. It’s important to note that the size of the
hive doesn’t indicate the severity of the reaction, just the likelihood that you are
allergic. So, I now have a diagnosis of a dust allergy too. Moving on. We talked about
how Cold Urticaria is affecting my life and she’s very happy with the way I’m handling
things, I’m dealing with it in a way that she would suggest to people to deal with it,
apart from the montelukast. Which… I took advice from strangers on the internet to give
it a go. And I’ll put a link up to the video where I started it. As time has gone on, side
effects have made it not worth it. So I miss being able to sleep, it has sort of impacted
my mental health but not massively. Not like in the horror stories. It just… Isn’t- it
isn’t where I’d like to be at. And it’s not providing any benefit at all because it’s
not asthma, we’ve checked this now with many specialists, it’s not asthma, I don’t need
to be on asthma drugs for it, we tried it, it doesn’t work, and now I can come off but
she didn’t tell me how. But I can go back to my doctors and be like ‘hey, how do I come
off this’ and they will help me do that now. A funny thing happened… During my skin prick
test, I’m not phobic of needles, you can tell, I have tattoos and piercings and stuff, needles
don’t bother me. However, my body has other ideas, so after my skin was pricked for the
skin prick test, I got very very dizzy. Gotta love that vasovagal syncope. It’s silly, I
was just sat in the chair like ‘are you serious’ I don’t have any anxiety around needles, at
all, and yet still… So we talked about my medical history and the EDS/hypermobility
spectrum still not quite sorted but we are now on that route of which is it. Because
I fainted, she’s another doctor that has said the word POTS at me. And has recommended that
I follow that up with my GP to kind of see about getting that sorted. I’m already on
beta blockers they kind of help but that’s for anxiety as well, and ugh, I don’t know,
but we’ll see. We’ll see what happens with that. More on that in the future. And then
we got talking about how wet cold is worse than dry cold. And we talked about aquagenic
urticaria and if I have it, it’s so mild that on its own it doesn’t cause a problem, but
there might be an interplay with cold and water because that’s the only reason why wet
cold would be worse than dry cold, but I don’t know if that’s been added as an official diagnosis
or not but there- yeah. Wet cold is worse than dry cold and that’s the only reason that
we think why- Does that make sense? She took some blood to do um, an IgE test for some
foods that I’m having trouble with, um she wanted to check the rice allergy because it
doesn’t make a tonne of sense. I haven’t really talked about it much, I can’t really eat it
but the way that it affects my body [noise] she just wanted to check if it was a true
allergy or not, and if I can eat rice I’m gonna be so happy. She’s also testing my tryptase
levels because there is an overlap or a co-morbidity of EDS, and hypermobility stuff, with POTS
which she really does think I have, and a condition called Mast Cell Activation Syndrome,
I will talk more about it if I have it, but she’s testing for that which is basically
an overreaction of mast cells to things that shouldn’t really cause allergy, so it’s not
a ‘true allergy’ but it’s- it’s kind of related. It’s the same symptoms, but it’s not IgE mediated,
that’s a whole other thing, but we’re testing for that, I’ll let you know if anything happens
with that. That’s kind of it, it went really well, and I’m glad that after a year we finally
got there and I will let you know what happens in a follow up video. But that was my allergist
appointment. So thank you for sticking with me up until this point, and being patient
with me while I waited for my appointment. Don’t forget to like this video, drop a comment
down below with any thoughts and feelings, subscribe to my channel for more Cold Urticaria
content, and other allergy content now I suppose. And ring that notification bell so you get
notified every single time I post a new video, videos go up every Saturday at 6pm UK time
with at least one bonus video every single month. See ya!


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