Multiple sclerosis (MS) is a condition of the central nervous system, interfering with nerve impulses within the brain, spinal cord and optic nerves. It is characterised by sclerosis, which is a Greek word meaning scars. These scars occur within the central nervous system and depending on where they develop, manifest into various symptoms.
Well I said I would get to the MS thing later, so here it is …
It’s now been well and truly established that I have Ehlers-Danlos Syndrome, but before I finally got the diagnosis, I was firmly stuck under an MS umbrella.
Travelling back through time we can now recognise that a lot of my ‘childhood symptoms/illnesses’ fell under the EDS category (that were unfortunately missed) but as I got older I started to get a lot of weird and unexplained neurological symptoms.
I remember when I was 28 I had a strange pins and needles, but not pins and needles, feeling in the top of my left index finger. I thought it was quite odd, but didn’t worry about it until it had been there for a few days. I saw a doctor who referred me straight to a Neurologist, and that was back in the day when doctors still did hand-written letters, lol.
I never bothered making an appointment as it eventually went away on it’s own and anyways, let’s face it, I was in my late 20’s, I had better shit to do with my time!
It wasn’t until I was 35 (years young) that the neurological symptom came back again, but this time instead of being a ‘symptom’ – it was now ‘symptomS‘!
I had most of the classic textbook symptoms of MS > tingling, burning patches of skin, fatigue, dragging foot/tripping over, numb patches, fasciculations, bladder urgency, etc – so eventually went to see a Neurologist who ordered an MRI.
The MRI came back lesion free, YAAY, but the Neurologist wouldn’t rule out MS for definite at that stage. Why? Apparently I should of had the MRI when the “attack” (my term for it) was actually happening and not after it had finished. I was told that if and/or when it happened again I was to go see him immediately so another MRI could be done.
Now admittedly I didn’t always do as I was told and would usually go and see him after the “attacks” had finished. Over the next few years I had 2 more MRI’s, but they came back clear.
At this stage I told him I didn’t want to pursue it any further and if it was MS (?) we would eventually find out one way or another. He was totally fine with that and explained that if I could go 10 years with clear MRI’s, then it definitely wasn’t MS.
Throughout the years I still continued to have these “attacks” (some being worse than others) but each time I had an MRI, the results always came back ‘normal’.
By the 6th-7th year I’d pretty much accepted that the neuro “attacks” were just part and parcel of who I was, and although it would of been nice to get an explanation of why, it didn’t matter anymore.
Now when I say the MRI’s came back ‘normal’, I mean that in an MS lesion free ‘normal’, as the results were definitely not ‘normal’ when it came to the amount of osteoarthritis, bone spurs and disc bulges I had. The specialists were always shocked at the state of my spine, but not one of them ever looked in to why it was happening?
I kept asking why my spine was in such a bad way, but none of them had any answers and would just keep telling me that it must be a “genetic thing.” I eventually got fed up with being tested for suspected MS and made it crystal clear to everyone that if MS with brought up with me again, I was going to totally lose my shit!
That was in 2014.
So even though I was still having “attacks,” I never mentioned them to anyone and remained MRI free for a few years – which was great as I forgot to mention earlier that I HATE having MRI’s done! In the beginning I was okay with them, but I think it was during the 3rd one (?) that I had a bit of a freak out and had to start self-sedating.
It wasn’t until 2017 when I had another “attack,” but this time it was a BIG one and a little bit scary! At first I ignored it, as you do, but by day 4 I finally mentioned it to my husband – only because it was getting harder to hide it from him. He wanted me to go and see someone right there and then, but it wasn’t until 2 days later when I was worried I may of had a stroke ? that I finally agreed for him to take me to the emergency department.
A team of doctors, including the head emergency doc, come in to see me and it didn’t take long before they were bombarding me with a shit-load of questions. Obviously the MS thing came up (of course it did *rolls eyes*) but I firmly explained that I was now in the 12th year of “attacks”, the previous MRI’s were all CLEAR and it WAS NOT MS!!!
After about 20 mins they walked out and pulled the cubicle curtain across so we couldn’t see them and started chatting among themselves. Now we weren’t sure if they thought by doing that we wouldn’t be able to hear them talking, but umm SPOILER ALERT – that’s not how a cotton/paper curtain works and I instantly got pissed off!
Here we go again with the MS bullshit!
The head of emergency doctor finally came back in to talk to us, but this time he was on his own. He said he understood that I didn’t want to hear about MS anymore, but because it had been a few years since my last MRI, it was in my best interest to have another one.
OMFG you have got to be fucking kidding me!
I was so bloody angry that this suspected MS bullshit had come back and bitten me in the arse again as it was the one thing that I’d grown so sick and tired of hearing about over the years. He assured me that I hadn’t had a stroke, which was obviously good news, but he said the neurological symptoms I was experiencing fell in line with Multiple Sclerosis.
I finally agreed to the MRI on the condition that I never be tested for suspected MS ever again if it came back ‘normal’ – and guess what!?! It came back frign ‘NORMAL!’
So once again there was no explanation of why these “attacks” were happening, and although they could put some of the symptoms down to irritated nerves in my rapidly degenerating spine, it couldn’t account for all of them. That “attack” lasted another 2.5 weeks and then slowly disappeared from my body over a period of about a 3-4 days.
Welcome to my life! lol
I stayed angry for a while after that, but the anger was directed solely at myself for agreeing to another MRI when I’d said back in 2014 that I was never going to do it again. From now on I wasn’t going to give a rats arse about the “attacks” anymore and vowed that, regardless of how bad an “attack” would ever get, I was just going to ignore it. Which I did!
Fast forward to May 2019, which was the month I got diagnosed with Ehlers, I also (finally) got an explanation for the neuro “attacks” – which I never expected in a million years! The EDS guru explained it had been the Ehlers causing the neurological issues this whole time and had absolutely nothing to do with Multiple Sclerosis.
Hmm so how many doctors do you reckon I wanted to go and see again so I could shove that snippet of information fair and square up their arse?
Through those years all of the symptoms were only ever looked at through tunnel vision minds when it should of been a ‘thinking/looking outside the square’ situation. As soon as what they thought it was – wasn’t what they thought it was – they just didn’t want to know me anymore.
In saying that though, I have to give credit where credit is due >
I’ve recently found out that a specialist I saw back in 2012 for suspected RSD (reflex sympathetic dystrophy) had actually looked outside the square with my symptoms, but my GP at the time didn’t follow it through. The specialist ordered an MRI to rule out MS (of course he did) but he’d also told the GP if the MRI came back clear, he strongly recommended a referral to a Rheumatologist for a possible connective tissue disorder.
So, a recommendation from a specialist, that I’ve only been aware of since last week, could of saved me 7 long years of pointless specialist appointments/tests/shit loads of $$$ AND my sanity, if my (ex) GP had just done his damn job properly in the first place!
And people wonder why I have no trust in the medical system, pffffft!
So to you good sir, that I won’t mention by name – thank you kindly! You were the only one!
Oh and by the way it wasn’t RSD after all – it was Raynauds 😉
Hugs / Peace Out! Essie ❣