One of the sayings I heard when I was initially diagnosed with multiple sclerosis was “no two people with MS have the same symptoms”, so a year on from diagnosis I wanted to give you an idea of my symptoms.
My short term memory was one of my very early signs, I can remember things from years ago but not what I did half an hour ago, even today I set off for the pub for lunch and drove straight past, no one knows this only me, oh and you if you are reading this now 😊, yesterday I was taking a friend home and completely forgot even though she was sat next to me. One of the questions on the PIP application is “can you plan a route”, aye I can plan one but unless someone is sat next me telling me where I am going I will forget, strangely enough, I never said that in my application though.
Either I can’t go or I can’t stop going there isn’t much in between, my main worry is if I need to go and I have to wait then it just won’t come out and I end up backed up in an awful lot of pain, so if you see me using a disabled toilet a lot of the time that is why.
You probably all shudder sometimes, you will have heard people say “someone just walked over their grave”, but this is like a full-on electric shock through your body, you literally can’t move until it is over, mine often happen in bed and I get stuck in one position as it passes through my body from my neck down my spine and often ending up in my arms.
A lot of my symptoms are exacerbated by fatigue and this is just one of them, they start internally in both my arms and legs and if I don’t stop what I am doing they very quickly turn to external shaking which means I lose the use of both my arms and legs until it settles down, this post shows what happens when I can’t get out of a situation in time.
Having had IBS for years I have always put it down to stress and diet, but it’s different now because I don’t get any warning signs it just comes on of it’s own accord and while for a lot of years I have had the runnier side of IBS, now I have gone the other way and more often than not I am constipated and then when I manage to go I then get the runs. I am awaiting a trial of the Peristeen System to see if that can help me.
This is generally neuropathic pain and can be anything from the pain of spasticity which hurts like a bastard, pins and needles, stomach pain from being unable to go to the toilet, pain from joints locking or giving way, pain from electric shocks and any other unexplained pain I get.
Back in 2013 when I had my first flare it was my eyes that went blurry and I couldn’t focus, now when I get really fatigued they are one of the first things I struggle with, my left eye starts to droop, I can’t see words on a screen in front of me, I can’t watch television I just have to sleep to recover. Also having migraines with aura doesn’t help.
Have you ever woken up with cramp during the night, well times that by ten, when I say the pain is excruciating I am not exaggerating, my leg locks from top to bottom, my arms lock, my fingers lock, my stomach locks, my neck locks and then there is the MS Hug which feels like someone is squeezing the life out of you, that feels like the worst heartburn you could have and it’s all down to my muscles going into spasm.
Also known as brain fog/cog fog. Before I was diagnosed my attention span was getting shorter, I was struggling with decision making and as a born organiser I was not organising, I was seeing things in front of me and not recognising them. Spreadsheets that I had always excelled at, pardon the pun, I couldn’t decipher. I became unreliable because the information I was producing was wrong and I couldn’t see it.
Another symptom that is exacerbated by fatigue, I get to the stage when I can’t understand what is in front of me, reading line after line and not recognising what a chapter of a book is about, this is one of my most scary symptoms because I feel like I am losing my mind, up to now it has come back once I have rested but it does make me think there may be a time it won’t.
This is also called a spinal tap and is a diagnostic test for multiple sclerosis that removes a sample of cerebrospinal fluid, this is the fluid that surrounds the brain and spinal cord within the skull and backbone.
In 2014 I had this test and it came back positive for oligoclonal bands, this means the antibodies in my blood where high and destroying the myelin surrounding my nerves, myelin is the sheath that surrounds the nerves and it’s this getting destroyed which is a classic MS diagnosis, however I wasn’t officially diagnosed at that time.
With a multiple sclerosis diagnosis comes all different kinds of thoughts, I had been off work for nearly a year when I was diagnosed and missed both work and my friends/colleagues so much, through that year and while I was still employed I had a constant sense of guilt, that I was letting my colleagues down, letting the company down and letting myself down. You could say it was a massive emotional roller coaster, but nothing prepared me for when I finally left work for good and the sense of loss within me.
Therapy helps but the last year I have almost grieved for the loss of work, my social life and I still swallow down a lump in my throat at the thought of never swimming again.
This is a whole blog post in draft.
My first diagnosis was of relapsing and remitting multiple sclerosis and I was prescribed a course of steroids which instead of reversing my flare made it worse, so sadly I was given a primary progressive multiple sclerosis diagnosis instead, there are no known drugs that are suitable for me so I just manage my MS as best I can.
These where my lifeline before I was even diagnosed, I referred myself and a lovely nurse came to see me, she sorted me out a lifeline, an extra bannister and a bath board and all were invaluable when I was in my house, they would have done more but the house was rented and wasn’t suitable for further alterations, don’t hesitate to self refer you will be surprised what help is out there if you ask.
You will have seen me mention this in other posts as it’s something that really affects me now, noise, smell, taste, you really wouldn’t believe that someone who used to go to rock concerts and rugby games now has to wear noise-cancelling headphones. Someone who loved sitting out in the sun is now sensitive to heat, I have always had sensitivities to smells as they give me a headache and things taste different depending on how fatigued I am.
I often take a long time to get to sleep then when I do get to sleep I get woken up with spasticity, MS hug and just recently it’s been the Lhermittes Sign.
Many of you wouldn’t notice this unless you spend a lot of time in my company, but if I am out and about and starting to tire the first thing my Mum notices is my speech starts to slow and eventually slur and for someone that used to talk at 100 miles an hour it’s strange.
The above spells out multiple sclerosis but the largest enabler for all of the above is fatigue, it really is the most debilitating part of this illness because of the knock-on effect it has and because no matter how much rest I get I still wake up feeling un-refreshed.
No magic diets, no CBD, no exercise, no pills or potions or any of the other suggestions that used to get thrown at me on a daily basis will help.
Do you suffer from any or all of the above and is fatigue also your enabler? Let me know in the comments.