Hellish weeks to come.....

We left off last where I had just taken another dose of steroids at home.... I don't know much about steroids and how they work etc,...

Monday, 19 February 2018

Hellish weeks to come.....


We left off last where I had just taken another dose of steroids at home....


I don't know much about steroids and how they work etc, so I really was in the dark about the effects they would have. My mum, being an ex-nurse, had some experience but on, what we didn't know at the time, much smaller doses.

In fairness, the doctor at the hospital had not really explained any sort of possible side-effects or normal effects that they could give. He hadn't even told us what dosage I had been put on.

I had been put on 500mg tablets, twice daily. My mum was shocked when she found out that was what I had been put on with no advice about them at all. This stuff was STRONG.

Day in and day out for 2 weeks I took these tablets. Day in and day out I was having hallucinations, anxiety, paranoia, and BP that was juuuust a little high.. ( 180/140 at its highest )

I was screaming because the curtains were moving, I was crying because my door was knocking due to the wind. My mum described it like I had been regressed to a child who was having nightmares but awake.

The only way I can describe it is as, the worst possible two weeks of my entire life. It was like I had actually been sent to hell. I was imagining things I didn't think were possible. I genuinely thought there was a creature under my bed trying to grab me. So much so that I put stuff to block under my bed and always slept right up against the wall so it couldn't get to me. I wouldn't have wished that on my worst enemy (and there are some people I really truly hate).

One of the days I was convinced that there was something wrong with me. Something that had to be checked out. I called mum and she came running and I explained that I needed to see a doctor, that second. She called the ambulance service because she was just frightened of what was happening to me. They promptly sent an ambulance.

The paramedic came up to my room, mum and I explained what I was being treated with and explained why they had been called. The paramedic did not seem impressed with why they had been sent, you could see it in his face, but he promptly said "Whilst we are here, we may as well check you out" so he put the blood pressure cuff on my arm, needless to say, when he saw the numbers he went a little bit more professional and, what seemed at the time, slightly grey. That is the day my BP was 180/140. The paramedic promptly said, "Okay.. your blood pressure is actually quite high so we will be taking you back to the hospital to be seen properly".

Great... here we go again!

The Investigation is complete, but what next.....


Hello All,

Sorry for not having posted in a while, have been adjusting to new meds and some family troubles. Hopefully back on track now.

So we last left off with the lovely, not so lovely, nurse and being sent home in a wheelchair.

Needless to say, leaving the hospital in a wheelchair after arriving feeling pretty much fine was a bit of a wake-up call. Mum was being her usual loving and caring self, being an ex-nurse definitely helped with what started happening next.

To say I felt drowsy was an understatement, it felt like I had been out drinking all day and had been collected after creating some sort of pavement artwork. I was dizzy, confused, and really not quite sure what was happening to me.

So we got home. I had to climb the stairs to get to my room to lay down. At the time we lived in a terraced house, the typical small rooms kind of place with stairs that would challenge even the most confident of climbers. So I slowly made my way up the stairs to my room, doing so whilst going backward on my ass because standing up was really not an option at this time. I went to my bed and with a sigh of relief, I thought "Finally... I can get some sleep". Oh was I so wrong.

As I laid down to attempt to sleep the room started spinning as if I was on one of those swing rides at a theme park. I was literally clinging on to my bed to stop myself being flung off. My mum, bless her, reassured me that I was not going to fall off and to try and get some sleep. I'm still not quite sure how long it was before I did nod off but it seemed like an age at the time.

The next day, about 2pm when I actually woke up my mum came into my room to say that it was time for me to take my next dose of steroids, luckily these were in tablet form. Unluckily they still tasted like pure evil and because they were so small and dusty they started to dissolve in my mouth. I had to spit it out, my mum said to hold on and she would figure something out.

Time passed (I still wasn't able to judge how fast or slow time was going in my head) and mum came back upstairs. This genius woman had got some of the gel capsules that some medication comes in, had ground up the tablet and put it in them so I could easily take them. What an absolute godsend!

I took my tablet with no issue whatsoever, failing to realize the effect it would take on me.




Friday, 1 December 2017

The Foot is investigated...


                   So we left off awaiting a Lumbar Puncture. I understand it has been a long while since the last post but it's been a struggle with new medication and certain developments within my health so I hope you're not disappointed at this instalment of my journey.

                   So let us continue. A Lumbar Puncture.. well how can you describe this to someone who hasn't experienced it. Easily put its where they basically stick a needle and syringe into your spinal cord to extract CSF (Cerebral Spinal Fluid). In order to do this, the patient (me in this case) has to curl up in what can only be described as the fetal position, this expands your spinal column allowing the doctors access to your spinal cord. The reason they do this procedure is to examine your CSF for a particular protein. Don't ask me what the protein is as at this stage, being needle-phobic, I was more concerned about a large needle going into my spine. Now as far as I am aware, if this protein is found, it's a surefire confirmation of MS.

                   So there I am, laying on my side, terrified of what's to come. I have two doctors in my room, one explaining what is happening, and one (who I later find out is a junior doctor) performing the procedure. I'm told I need to stay perfectly still (yeah... with a needle in my spine.. that's not hard at all!) or it could cause complications. First, they inject the area with local anaesthetic apparently too dull the majority of the pain. I'm told to take a deep breath and they start pushing the needle in. The best description is similar to what I think it would feel like for someone to press a wooden spoon ridiculously hard into one point in your back. Its an extremely dull pain and pressure. Then the jolts start...

                   The jolts were apparently not meant to happen, but what basically was happening was that the Doctor was catching a nerve (leading to my legs) and that was sending what felt like electricity from my back all the way down my leg, making my leg want to move. Resisting this and saying a few choice words.. the procedure continued. They removed the needle and attempted again, the same thing happened, so they try again, and again, and again. A total of four attempts were made when I was laying on my side. The Doctors decided they needed to try a different approach. They got me upright and whilst sitting down bent me over a table leaning on a fresh pillow. A lovely nurse brought me this pillow as my body was going into shock, my blood pressure was not healthy at all and I was sweating what felt like my body weight in sweat.


                   I'm finally quite comfortable leaning on this pillow and those words come again "Big breath" and back in the needle goes. Again I get the electricity like jolts down my leg and all I can think through this entire process is "DO NOT MOVE, JUST DON'T!" They finally get the syringe correctly in place, they ask me to stay still for a few more seconds and they show me the results of all the pain and hard work. A small vial with no more than about 10ml of a clear fluid. They warn me that I am going to experience some severe headaches for the next hour due to the brain adjusting to the drop in the fluid.

                 It's finally over, or so I thought. The Doctors advised they were going to be placing me on a course of steroids. Heavy duty stuff. I agree because at this stage what the hell else am I going to do. My mum comes back into my room with a can of Pepsi (apparently carbonated drinks help after this kind of procedure). I am laying flat, completely flat as if I was a vampire resting in its coffin. I don't want to move due to the unreal amount of pain I'm in. In comes the lovely nurse again to replace my sweat soaked pillow (not a pretty sight). She hands me a clear liquid and tells me its the steroids and to drink in one. As lovely as she was, I won't forgive her for not telling me it tastes like pure evil, I'm talking rancid vomit endusing stuff. Luckily my stomache was empty and I kept it down. They then left me for an hour. Got me a wheelchair to get me to the car and so began my week of pure hell.

             




Friday, 1 September 2017

The foot is not a foot...


                  So we last left off with the registrar neurologist wanting an urgent MRI. Needless to say, this scared the crap out of me.

                  My father works at the hospital and has done for many years. Naturally, under this situation, I called him to let him know that I was in the hospital and what was happening, he was unsurprisingly confused at the whole situation and just told me to let him know what was happening and to stay as calm as I could.

                 The neurologist arranged for me to go onto a ward (don't ask me the name of it, I can barely remember what I did last week) but needless to say it all started to feel a bit surreal and frightening. Luckily the ward I was sent too had the most incredible Sister in charge. She took me to a side room to wait for them to sort out my bed for the night. I had been sent to what was a neurology ward, it had lots of different patients but mainly of the older generation suffering from things such as dementia and Parkinsons who needed care within a hospital, because of this and the various conditions they were suffering from, sadly they were making a lot of noise (it didn't make me uncomfortable but it makes sense for what comes next). The sister decided, because I was about 50 years younger than their youngest patient, that it would be more suitable for me to be away and in a side room which was the first time ever I've been in that situation but was very touched by the consideration. During my waiting for my room, I called my mum, absolute salt of the earth she is, and she made her way to the hospital with a few overnight essentials (iPad, pyjamas, fresh underwear etc) she arrived right about when I was going into my room. 

               I had basically settled down in my room, had gotten comfy and they came along to take my for my MRI scan, I've had one before for various injuries in the past but never on my brain so I was quite interested in how different it was. They wheeled me down to the MRI room (guess they didn't want me to get lost?). Now for anyone who has never been in an MRI machine I can only describe it as basically a ridiculously strong magnet in the shape of a tube which, coincidently, is the perfect size for you to be slid into. You get placed on, what is essentially a motorized stretcher, with a bracket around your head to keep it still (you have headphones on for some music) and you have to just sit patiently, wait and stay as perfectly still as you can (harder than it seems) an hour went past, with some absolute classics on the headphones (David Bowie, Billy Ocean... yes.. I am that sad). I was wheeled back to my room and prepared for a long night. 

             7 am came quicker than expected but it felt like I hadn't slept at all. Along came my breakfast a really lovely bit of toast with marmite and some orange juice. About 10 am the consultant came in, to say I was apprehensive was an understatement. He advised that I had some lesions (scars on the white matter of the brain). I had absolutely no clue what that meant, but he advised that it meant that there was a very high chance of me having MS but to confirm they would need to perform a Lumbar Puncture later on that day. 

Thursday, 17 August 2017

The case was afoot!

The case was afoot!


Following where we left off, I was getting some concerning symptoms and, at the time, nothing that explained it. I did the sensible thing that anyone would do and I decided to visit my doctors. 

I went through the usual rigmarole of booking an appointment as everyone you have to get past the gatekeepers of the appointment diary... The receptionists. Now I have no issue with them personally, however, I do have an issue with them all the questions under the sun when they are not medically (or triage) trained.

Once 20 questions were finished I got my appointment, a doctor I hadn't heard of (I had been a patient at the same surgery since birth). This didn't concern me as you just trust in their judgement. A few days passed and my appointment had arrived. The Wednesday came and I promptly got to my doctor's surgery and sat patiently amongst the coughing and spluttering with a general feeling of there was nothing to be concerned about. I went in when called and gave all my concerns about my symptoms with my typing and judgement errors. My doctor took my blood pressure (unusually high for me) and then proceeded to check my reflexes (which I found unusual) and gave that concerning "Hmmm..." which instantly had my overthinking. Being the practical and doctor she seemed to be she advised that she was going to refer me to a neurologist at the hospital and I would hear from them by Monday. Confused as to why I was being referred I asked what was it for. My doctor advised that I had increased reflexes on one side and decreased on the other (that meant nothing to me) I did the standard "Ah ok... *Nod* " as if to say I understood. 

I left the doctors in a rather bemused state not being quite sure about what was happening but thought that if it was anything more serious they would have perhaps sent me to the hospital, little did I know, the moment I walked through my front door, I got a call. The same doctor I had just left. Without the usual introductions and pleasantries, you would generally expect she advised that she had spoken to the on call Neurologist Registrar (someone who deals with urgent queries and referrals on that chosen day) and was advised that I needed to go to the hospital a.s.a.p, no explanation just "The neurologist registrar wants to see you now, in the neurology department at the N&N.

I quickly grabbed my wallet and keys and jumped into my clapped out Toyota Corolla and made my way there, definitely worried and smoking like an absolute chimney in the car. Bear in mind at the time I lived 15 minutes away from the hospital, I must have smoked 4-5 cigarettes on that journey alone. 

So I got to the hospital, parked up and made my way inside the maze of corridors and was shown straight into the neurologist's office where I met a middle age gentleman who confirmed who he was and went over the information I had given to my doctor. He did the same tests my doctor had done, blood pressure being higher (unsurprisingly) and my reflexes showing the same concerning signs as before. The neurologist said "I'm afraid you're going to have to stay in tonight, we need an urgent MRI (Magnetic Resonance Imaging) scan and there is a possibility you're having a stroke".

Tuesday, 8 August 2017

So it begins....

As the title suggests this is where I will talk about the start of my journey.





My name is Andrew (Andy to my friends), I am 26 years old and live in Norfolk, United Kingdom. Prior to my MS (Multiple Sclerosis) diagnosis, I was the typical mid 20-year-old male. I enjoyed going out with my friends and family, enjoyed a few drinks every now and then and yes sadly I am a smoker (More on that later). 

I worked a typical day job handling insurance claims and also volunteered for an organisation that involved doing things much too fun and dangerous to describe here.

Before I go into how it all started for me, I just want to clarify prior to my diagnosis I was a healthy man (bar the occasional man-flu) so I was fairly used to just cracking on with life, doing the usual day-to-day chores/jobs and generally enjoying life.

It all started in October 2016, I was at one of my regular pool games (I play every Monday and Thursday evening in a pool league). Now, it was an average pool evening, I'm not the greatest player around but I certainly have improved over the years and made some good friends from it. So, I am at the pool table, enjoying myself, having my usual non-alcoholic drink (thanks to driving), when suddenly out of the blue it felt like someone had stabbed me in the head. The pain was something I had never experienced before in my life and I couldn't help myself but sit down, exactly where I was and clutch my head. I immediately decided it was a good idea to head home.

So, I get home and straight away head to my room with a drink and painkillers. Usually, when I get home from a pool night, I would check out my favourite YouTubers new videos on my iPad and just relax, however, that evening any light or noise just made me feel physically sick.


Roll on the next morning... and I am fine, the headache has disappeared and it felt like nothing had happened the night prior so naturally, I thought "Ah... just a migraine, pick up ya feet and crack on!"



My day job was to basically investigate claims from "Non-Fault" Insurers in accidents against "At-Fault" insurers and make sure that what they are claiming is what they did to their client's vehicle and to the cost claimed. So being the 21st century it's purely computer based.I loved my job. It involved concentration, negotiating and investigating and these were some of my favourite things to do but following that headache, I started noticing errors. Not just your average typos but errors that would make your Year 7 ICT teacher cringe on top of errors in judgement. Things didn't seem right. I decided it was time to see if there was something more serious at play here.