What a whirlwind 2017 was for my health! What we thought was going to be a simple A&E trip on January 3rd, 2017 turned into me being admitted onto the cardiac intensive care unit, as my heart rate had reached an all time high – doctors later told my parents I was having what they call a “pre heart attack”. thankfully with persistence, many drugs and days on end being attached to multiple machines they brought it down to a acceptable level. It was later that week, I was diagnosed with PoTS, this was why my heart rate took so long to come down, and is still so high today despite being on beta blockers.
It was from that hospital admission, my health just continued to decline. With many appointments, tests, endless pain, treatments, medication changes and many diagnosis throughout 2017, it’s quite clear to say it’s been a tough year overall and I’m hoping with everything I have 2018 will bring more positive news, than negative… *fingers crossed*.
It’s been a couple of months since I last updated you on what’s been happening within my life. If you read my last update which I wrote back in December, you’ll know the pace is quickly picking up when it comes to my hospital life so I’ve got a lot to fill you in on. So let’s get to it;
Gastroenterology Appointment – 3rd December:
Surprisingly, my consultant was in a higher spirits than usual, wether it was because of the festive season or she was just pleased to see me I don’t know but it was nice to see. Anyway, we spoke about how the treatments I received from the last appointment (which I spoke about in my last update) hadn’t worked one, instead I’d reacting and having each of the bad side effects, which have been deliberating. Yet again, that’s another treatment that hadn’t worked and limits our options, but she decided to mix up a concoction of treatments and for me to start them. We know that treatments aren’t really going to do anything to my bowel, as it’s gone past that stage but my consultant can’t do anymore until tests are finished with my neurologist and my neurologist leases with my gastro doctor to guide her on what to do next.
We also spoke about how since my last weighing, I’d lost two and a half stone – which for someone who has complete digestive paralysis like myself, isn’t good as I obviously can’t eat and my stomach can only tolerate watery drinks. My consultant during our appointment said there’s not much she can do at this point as any sort of tube or feed, my body will reject. Though, we received a letter recently, saying my consultant wants us to meet with a new gastroenterologist, who also specialises in nutrition and dietary so they’ll be able to know what more to do, etc.
Neurology Tests – Throughout December:
Throughout the course of December I had multiple tests which neurology sent me to have. Thankfully they all came through a lot quicker than we expected meaning they’d all be done before Christmas! The tests I had done were;
- Bone Density Scan – this was to see how my bones in my hips and lower spine were looking. Due to being wheelchair bound for the last 4 years, my bones can decay causing osteoporosis so they were checking to see how things were looking.
- MRI Scan – the MRI was yet again of my brain as my neurologist wanted another recent scan of it for my migraines.
- MRV Scan – the MRV is a scan of the veins in and around my brain to see if any of them are blocked which could therefore be causing my migraines.
- NCV (Nerve Conduction Velocity Test) – this was to test how severe the nerve damage is within my legs. In this test, electrical signals were sent down specific nerves of my legs where an electrode placed in the skin detects the electrical impulse “down stream” from the first. The nerve is stimulated with a tiny electrical current at one point. A nerve stimulator placed over the nerve supplies the nerve with a very mild electrical impulse and this electrical activity is recorded by the recording skin electrode.
- EMG (Electromyogram) – this one was to record the electrical sounds from the muscles in my legs. During this test, the doctor using an acupuncture needle to record the electrical sounds from the muscles in each of my legs, if the muscle doesn’t receive any normal signals from a sick nerve, it broadcasts abnormal noise signals through the needle to a sound amplifier to help the doctor identify if a muscle is working with the nerve attached to it.
Neurology Appointment – 21st January:
Originally my appointment for neurology was meant to be in May but there’s no way I could have waited that long as my migraines are continuing to get worse day by day. Thankfully, when my mum rang up to ask them if they could bring my appointment forward – they did so straight away as they’d had a cancellation on the 21st of Jan! This obviously worked perfectly alongside the tests that had been done and my neurologist being able to carefully go over them before seeing me.
Nerves crippled me the week leading up to this appointment as I had no idea as to what the outcome would be. For so long now, so many doctors haven’t known “what to do” or “what’s wrong” so they’ve passed me on to other people that I just assume all doctors will do it too me. Although, after this appointment I can quite thankfully say I don’t ever have to feel like that with her.
Anyway, my neurologist started by getting my MRI scan up onto the screen and showing myself and my mum my brain. yes, I know it’s a shock I have one considering I have zero common sense! She continued on by telling us that there was a large meeting with all the neurologists from the area the day before we met with my neurologist and she brought my case up to them. She told them my story, how over time things have continued to worsen and showed them my recent scan results in which they discussed me for a fair while.
Thankfully, the results of my MRA Scan came back clear for any blocked veins within my brain (which there shouldn’t be as I’m on blood thinners).
On the MRI my neurologist found that I’ve got high pressure behind my eyes (IIH, idiopathic intracranial hypertension) which is a neurological condition that causes increased intracranial pressure around the eyes & brain. I’m waiting to see a Neuro-Ophthalmologist who will then tell me if she thinks it’s best if I have lumbar punctures to help treat my migraines or wether she thinks it’s better to get my Arnold Chairi operated on first then see if treatment is needed for this.
The second finding on my MRI was that my Arnold Chairi Malformation has gotten worse. The way my neurologist described it is like; my brain has slipped out my skull, is pushing on my spine and has now gotten stuck like a plug and is blocking any sort of fluid from reaching my brain therefore the pressure is building up around both my brain & spinal cord. She’s referred me to a Arnold Chairi specialist who knows about my case (as he was part of that meeting the day before) and believes that having brain surgery may be the best option for me right now. Though until we meet him, we won’t know anything for sure.
She believes that if these two specialists work together to find out which of two are causing the migraines OR if it’s both of them then treatment/surgeries will be done near enough straight away and *fingers crossed* my migraines will be gone by the end of the year! (god damn I hope so, as the pain is horrific)
Physio Appointment – 5th February:
This Physio Appointment was actually my first appointment with a actual Physio-Therapist since 2015! Although, one of my consultants actually sent me to a Neuro Physio-Therapist as they specialise in dealing with patients who are brain damaged like myself, therefore would work better with my condition/illnesses.
We met with the senior physio who told us that most physio work is done at home now, so they tell you what exercises to do and you continue to do them at home which was a little disheartening. We got the impression she thinks the best option for me would be to go into a rehabilitation, but obviously that’s not really an option at the moment. I just want the muscles I can use, to be strengthened and have some physio to keep my body going! *fingers crossed* our next appointment may bring some better news from her.
Gastroenterology Appointment – 14th February:
This appointment was actually with the new Gastroenterologist who my original gastro consultant believed might be better suited to me. Despite not always agreeing with my consultants options etc, this new Gastroenterologist who also specialising in Ehlers Danlos Syndrome and Nutrients seems to be pretty good and has taken over my care straight away!
After talking through the last 19 years of my life, she told me that I’ve got Ehlers Danlos Syndrome (here’s a link incase you’d like to know more; https://www.ehlers-danlos.org/what-is-eds/) and believes going back to the University College Hospital in London who specialises in EDS would be the best option. Unfortunately, EDS doesn’t have a cure and treatment options are very limited so between her and London they will try and control what they can symptom wise and keep me comfortable as my condition is deteriorating at a “chronic rate” (as my consultant described it).
Whilst waiting for my appointment for London to come through, my consultant wants me to have a couple of tests done. The first one being a Gastric Emptying Study (https://www.medicinenet.com/gastric_emptying_study/article.htm) which will test my stomach paralysis. Due to not being able to eat solids and now my stomach isn’t tolerating most forms of liquid, I’m not getting the nutrients, proteins, vitamins etc that I need for my body to function even the slightest bit, therefore this test will help us understand how bad my stomach paralysis is. My consultant mentioned that once this is done, she will refer me to the surgeons to get feeding tubes placed in my stomach and small bowel rather than my NG tube which goes down my nose into my stomach. The second test is a Movement Test which is where i swallow three star shaped pills and the X-ray follows the stars round my bowel to see if there’s any movement. These tests will then be sent off to London also, so they can get an idea of what to do next also.
My consultant describe how my condition is deteriorating at a chronic rate and she isn’t happy to allow it to carry on that way as my body is slowly poisoning itself. She was pretty hesitant that all the things I’ve mentioned above will be done ASAP so my pain and symptoms don’t have to carry on the way the are. So I’m feeling pretty positive about her!
That’s all I’ve got to update you on for now my lovelies, although it’s a fairly long one this month so I hope you’ve got yourself a cuppa tea and biscuits.
I hope you liked reading today’s update and it wasn’t too overwhelming! When I write these updates I do like to natter on but I want to put as much information as possible so you can all stay updated with what’s happening in my life.
I haven’t received all the test results as of yet and March is another hectic month of appointments so I’ll be sure to let you know how it goes.
Sending tons of love and hugs as always,