Medical Steps Forward

I finally got the test results back from the week long heart monitor, it is looking likely that I do
indeed have POTs. The next steps are to have an Echocardiogram on the 29th of May and
after that a tilt table test. I’m glad that we are moving forward but we are starting to move into
some slightly scary territory. Nothing so bad, only some of the treatments for POTs include IV
transfusions and a thing called IVig (Intravenous Immunoglobulin). IVig builds up your immune
system and stops it from attacking itself, this helps because links have been found between
POTs and autoimmune disorders (problems caused by your immune system fighting other
cells in your body). These are both fairly long term treatments so if we were to go down that
route they would be a choice to be made as to whether or not to get a PICC line (peripherally
inserted central catheter, a tube in your arm that goes into your veins) I’m overjoyed with that
possibility. Luckily, there are other options to try first, there’s a few different medications to try,
some of which have pretty horrific side effects and some of which I know from previous
experience would be incompatible with my body. The reason why IVig therapy would be a very
interesting thing to look into is that almost all of my health problems stem from autoimmune
issues. Hashimoto’s thyroiditis, coeliac disease, chronic fatigue syndrome and POTs are all
linked to autoimmune problems. This could mean that IVig could reset my autoimmune
system, potentially stopping me from having more health issues caused by my autoimmune
dysfunction.

Another medical update is that I’m going to ask my GP to test me for Mast Cell Activation
Syndrome (MCAS). MCAS is a little known disorder which is caused by mast cells working
overtime and overreacting to stimuli. Mast cells are responsible for regulating your immune
system. I have almost all the symptoms of MCAS and it is suspected that ⅓ of people with
POTs have MCAS. You’re probably thinking that I’m piling a lot on at once and  I can see how
it might look like that, but the reality is that if I want to do anything with the next year of my life
other than chase diagnoses I have to get things moving concurrently. What’s really interesting
is that I have already been on a MCAS medication without realising it. Sodium Cromoglycate
is used to treat MCAS and was given to me for allergic conjunctivitis. The medicines treats my
symptoms very well, and the allergic conjunctivitis itself is a symptom of MCAS.

A lot of information in a short time, I know, I feel like my head is spinning at a million miles a
minute! It’s important to figure out if I have MCAS or not because it can have considerable
effects which are best known about before they happen. Some GPs have a tendency to make
you feel like a hypochondriac if you turn up with a diagnosis and ask them to investigate. I’m
so lucky that my GP doesn’t, you have to remember that you live in your body and experience
it everyday, a GP sees you for 10 minutes every now and again. It’s so important to reach a
compromise with your doctor in terms of the knowledge you both hold. Personally, I like to
organise the evidence of why I think I may have a certain problem and present it to your GP
like you’re in a meeting. Be ready to take a no answer though, at the end of the day your GP
does have the upper hand on the medical knowledge front. Also GPs won’t just say no for the
sake of it.

MCAS may also explain symptoms I’ve had such as my neck swelling and a feeling of
pressure on my windpipe when my I had thyroiditis, which was one of the reasons why I got it
removed in 2015. It’s another interesting path to follow and see if it takes us anywhere.

If you read my POTs Appointment #1 post you’ll know that I’m not overwhelmed with joy at the
thought of a tilt table test. If you haven’t it’s a bit like a medieval torture device. I may be exaggerating
but, my blog, I’m aloud. I’m just going  to have to grin and bear it and hope that I faint quickly (I don’t
think I’ve ever wished that before). At this point I’ve been through so many medical procedures that
I’m practically a pin cushion. It will be worth it if this diagnosis sticks.

I don’t think there’s anything else to update on medically. Still having fun purple feet and my knees,
hips and ankles keep subluxating (partially dislocating). I think my dosette boxes will explode if I get
given any more tablets, they’re already at capacity! 14 Tablets a day is about it’s and my limit!