I have been advised to record an audit of my current symptoms, so here it is! I’m going to use the symptom list from the NHS website as headings:
Fatigue
I experience fatigue often. I still manage to work 4 days per week but find this exhausting. I am no longer able to do everything I want to do and I need to ration my energy and allocate recovery time. I avoid doing anything after work and have had to cancel several social commitments.
Vision Problems
Thankfully I don’t have any MS related vision problems.
Numbness and Tingling
This is an everyday problem for me, in fact I haven’t had a day without numbness and tingling for over 2 years. I get this in both feet and legs and sometimes in my left hand and it is noticeably worse when I’m cold. My left foot in particular feels like a cold, dead, heavy weight on the end of my leg!
Muscle Spasms, Stiffness and Weakness
This is also an everyday problem for me. My legs are stiff and painful, especially when I get up in the morning or after sitting for a while. Basically, when I stand up, I’m never quite sure what my legs are going to do! I sometimes have spasms and twitching in my left leg. I know I am much weaker than I used to be (but this is partly due to me being less active). I have noticeable weakness in one side of my left hand .
Mobility Problems
There are lots of things that contribute to my mobility problems – issues with balance, spasticity (stiffness), weakness, numbness and lacking confidence all contribute. I feel much safer when using a walking stick, especially on uneven or sloping surfaces. My EDSS (expanded Disability Status Scale) score was assessed as 4 by my neurologist in June 17 and as 6 in November 2018. It was just 1.5 twelve months prior to this. I’m not sure that I agree it is 6 now as although I require assistance for walking, I can still walk on flat uneven surfaces unaided.
Pain
I have some nerve pain on the left side of my body. During my last relapse, this was particularly painful (I’m told it feels like shingles pain) – thankfully it has faded to manageable levels, though has never disappeared. The spasticity in my legs is painful at times.
Problems with Thinking, Learning and Planning
In the MS world this is known as Cognitive Fog or Brain Fog. I know I have this, although it is very hard to assess or measure.
Depression and Anxiety
It is very difficult to NOT be depressed and anxious when you have MS!
Bladder Problems
Thankfully I don’t have bladder problems. During my last relapse I had a common problem experienced by people with MS where I knew I needed to go but couldn’t! This is caused by damage to the spinal cord in the area that leads to the bladder, so the message from the brain doesn’t get through. Luckily this wasn’t permanent, but it remains one of the things I most worry about as my MS progresses.
Bowel Problems
Thankfully I don’t have bowel problems.
Speech and Swallowing Problems
I don’t have swallowing problems and my speech problems are limited to sometimes being unable to recall a word for something (linked to brain fog rather than a speech problem). About 4 years ago I had a period of slight slurring and was aware this was linked to the way the left side of my face and mouth moved.
Balance
For some reason balance isn’t on the NHS list, yet it is a very common problem for people with MS. My balance has got steadily worse over the last 18 months.
Additional symptoms added 18.01.19.