What do Symptoms Feel Like?
I get asked this a lot by people who don't have MS and, of course, I'm not expecting them to magically gain an exact insight, but I hope that in my explanations I can at least get them to better understand.
Fatigue is a big one but because of this I feel it deserves its own post so I'll leave this one to another time.
Hyperacusis and Misophonia - medical sensitivities to noise and they tend to be a specific kind of noise, like humming or low level sounds that tend not only to grate on the ear but can also cause headache.
Nocturia (or in my language 'a pain in the arse'!)
In medical language, nocturia is urinary frequency at night. It means you can take 1-4 trips to the loo at night and it's biggest pain is that you don't ever feel like you get a full night's sleep, thus one of many secondary things that cause fatigue.
I've catalogued a lot here, but it's just to raise awareness. I really have got used to them. I note them down to talk to the MS care team and if they really bother me, I contact my MS nurse to get advice.
Heat sensitivity
I know this isn't a symptom but as a heat sensitive MSer, any heat whether it's in the Summer or an over-compensating heater in Winter, can either knock me out or can leave me dazed and confused. See my post on fatigue for sources.
Fatigue is a big one but because of this I feel it deserves its own post so I'll leave this one to another time.
Cognitive Fog
'Cog fog', as it's known within the community, often acts in conjunction with fatigue. It's a disconnection from the world, a lack of alertness that brings on other symptoms such as issues with word-finding and concentration, and sometimes slurring of words. I sometimes feel like my brain is following but my mouth or hands are catching up. It's one of my most frustrating of symptoms as I know how articulate I can be and I often worry about how others, who may not know I have MS or if they do, may not understand it, perceive me. It's like being drunk without all of the benefits. It's yet another devious reminder of how my MS bullies me.
Balance & Stumbling
I often get out of my balance issues by laughing at myself. You know, when you fall back into your chair when you try to get up or when you get wrong-footed walking off a pavement. I sometimes swerve into strangers or can see I'm about to bump into someone but need braking distance I don't seem to have. There is a serious side, however. I can't walk down stairs without using the rail. I can't walk anywhere near the edge of a train platform. Don't worry TFL, I'm right behind that yellow line! I have a pain in my hip, which I see a neurphysio for, and this causes me to slightly waddle. Sometimes, use a walking stick for balance or to propel myself forward when walking. I try not to use it at work; too many questions I cannot answer.
Spasticity
This is one of my minor symptoms. I wake up or get up after sitting for a while, and my muscles are stiff and painful. It's not too bad, as I walk it off and it disappears within ten minutes.
Neuropathic Pain
In March 2017, I began to have pains in my chest and my arm. GPs were in disagreement - I got every possible suggestion from stomach issues to cardiac issues. It took months to get anywhere (including two scary trips to A&E) and eventually, I got a big thumbs up from a cardiologist. The MS team put me on Gabapentin, as I was diagnosed with a relapse. The pills took a long time to work, as I had to work out the dosage. In the meantime, I was in pain for 70% of the time and, at times, it was excruciating. I've reduced the dosage (it's a pill you have to be extremely careful with) but the symptom is hanging around so I'll stay on it for now.
Noise
Hyperacusis and Misophonia - medical sensitivities to noise and they tend to be a specific kind of noise, like humming or low level sounds that tend not only to grate on the ear but can also cause headache.
Migraine
...which leads me on to this lovely condition. It's not a symptom but a few of us MSers seem to be prone to it. If you've ever experienced one, a migraine can literally be blinding. Sometimes, I cannot open my eyes and have to lie down in the quiet. Sometimes, I look up and my vision is distorted, like shattered glass or I can see waves either side of my eye line.
Vertigo
In the past year, I've also experienced vertigo. The jury's out as to whether or not this MS-related in my case, but it happens infrequently and is a bit of a coincidence. It's mild, I feel nausea, but I seem to recover quickly.
Dysaesthesia
No, I can't say it either! But it's one of my very common symptoms. Tingling and pins and needs in my hands, itching like ants crawling over my body (usually my scalp and arms), numbness in my hand and foot when I have a temperature. For me, this is completely manageable. I know others who tear at their hair and clothes so I'm very lucky.
Nocturia (or in my language 'a pain in the arse'!)
In medical language, nocturia is urinary frequency at night. It means you can take 1-4 trips to the loo at night and it's biggest pain is that you don't ever feel like you get a full night's sleep, thus one of many secondary things that cause fatigue.
I've catalogued a lot here, but it's just to raise awareness. I really have got used to them. I note them down to talk to the MS care team and if they really bother me, I contact my MS nurse to get advice.
Heat sensitivity
I know this isn't a symptom but as a heat sensitive MSer, any heat whether it's in the Summer or an over-compensating heater in Winter, can either knock me out or can leave me dazed and confused. See my post on fatigue for sources.