As part of the relaunch of my blog I thought it would be helpful for those of you that have only just started following me to have some background to how I got here and how my diagnosis with MS came about.
In October 2017 I fell asleep behind the wheel of my car, this was a very scary wake up call and thankfully I was stationery at the time.
I had started to really struggle with work, concentrating and performing to the levels I expected of myself.
I loved my job, loved the people I was around daily and thrived on the intensity and spontaneity of it never knowing from one minute to the next what I would be doing.
Over the months previous I had noticed I was really struggling to get going in a Morning, if I was going anywhere I would have to be up for a good two hours before all my senses started to work properly, this was starting to get progressively worse to the point I was struggling to keep awake during the day.
The result of this was a visit to the GP on the day I had the car incident, she did lots of checks, arranged bloods and referred me to see a neurologist, which was immediately bounced back, and I was advised I would be dealt with in Primary Care.
Now this will become more apparent as I go through this why that neurology appointment was pertinent to my whole illness.
Over the next few months my symptoms got worse, the constant fatigue, permanent headache, brain fog, aching limbs etc., All this time my GP was putting it down to fatigue and eventually referred me to the CFS Clinic.
I attended the CFS Clinic in March and after a thorough examination and being informed yes, I did have CFS but due to my history of a possible TIA in 2013 where both a lesion was found on my brain and a lumber puncture showed positive he wanted me to also see the neurologist to rule anything else out.
I managed to secure an appointment with the neurologist and he informed me I had positional vertigo and gave me exercises to do and ordered a CT Scan, not really knowing why it was more of a let’s just see.
I went for an MRI Scan and I knew at the time there was an issue as the consultant radiologist kept sending me back into the machine including requesting contrast.
Following my scan, I got a very quick follow on appointment, well 3 weeks but in this day and age that is quick.
On Thursday last week I went for that follow up appointment and saw a lovely registrar who was very thorough and listened to everything I said while carrying out different reaction tests on me.
Eventually after about ½ hour she went off to speak to my Consultant and came back in informing me I have more lesions on my brain and therefore they are now giving a diagnosis of MS oh and Migraines, which I have had for years and never really done anything about, just in my usual way got on with it.
In all honesty and it might sound strange, but I actually breathed a sigh of relief, that at long last this bloody awful illness had a name, that I hadn’t been swinging the lead for the last 10 months, I know longer felt guilty for not being at work, for letting friends down etc., I now had a way forward, admittedly slowly but a way forward.
She advised me I would be seen in clinic every 3 months and be appointed an MS nurse immediately who would be able to help and advise me on how to manage the illness. She asked if there was anything I wanted, and I immediately said I wanted to get back to swimming and fitness, which was not recommended when I had the CFS diagnosis, however with MS it is advised, so she has referred me to physio to slowly build up my muscles and core strength again.
I left that room feeling so much better about everything and even though I know it is going to be a slow process it is one I am grabbing with both hands.
A few months ago, I took the opportunity due to my illness to take voluntary redundancy from my job that I love, there is absolutely no way would I have even applied for it in for previous state but maybe I saw it as a way out and still be able to live. Now that is my crutch it gives me time to build myself back up again and hope that in the future I will be able to return to work even in a limited capacity and also will allow me my dream of going to Australia which was one of the first things I missed out on at the start of my illness.
If you have managed to get to the bottom of this thanks for sticking by me, this is a post of hope and I need you all to know that.
I feel fortunate that I have been diagnosed with an illness where there is support, people do believe you and though funding isn’t enormous they are learning new ways of dealing with it every day. With that in mind I spent 6 months believing I had CFS/ME and the funding and support for that is embarrassing so I will still be championing their cause as much as I can.
The only gripe I have is my GP immediately believed it might be neurological and with my history did absolutely the right thing in referring me, what I would like to know is who makes the decision for you not to see that neurologist as this could have been diagnosed a good 6 months earlier in which case I wouldn’t be so deconditioned and might actually have been able to carry on doing the things I love, yes it does make me a bit bitter.
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