things of interest

I’m writing this in the hope that some of you will find what I say interesting, and some may have answers to my questions. I’m nearly 64 years old, and I was diagnosed with ms - I write it lower case because I can - in 1994, and in that time I’ve seen various consultants and doctors and ms nurses, and none of them seem particularly interested in my symptoms. I was told by one consultant that my ms was dead and therefore not a problem. I’m not saying it is, but what I am saying is it’s an amazing thing, the brain, and how much we should be able to learn about it from our ms.

Approximately two hours after a particularly long sauna session, in May 1994, I had my first symptom which was a momentary weightlessness in my left leg. It lasted a few minutes. Over the years I went on to have other incidents of weightlessness either in my arms or my legs.

Two queries: could it have been kicked off by the sauna? Over the past few years, hot weather has caused weakness in both my legs and/or great tiredness. It’s not every bout of hot weather, but probably every other. Is there any connection between my initial experience following a sauna, and my symptoms during hot weather today?

When describing the symptom of weightlessness to a medic, it looks like it never ticks a box for them, and I need to go to greater lengths in my description, although I can’t really improve on ‘weightlessness’. I couldn’t plan for these episodes, and several glasses of wine have been spilt because of them.

It was about a year until I was diagnosed, by which time I had a blind spot which meant I could no longer drive. I was eventually sent to have daily steroid drips which did reduce the blind spot, but I had to wait three weeks after the treatment until I got that result – my consultant had said it would be two weeks max. I then started driving again, but I was left with a particularly irksome blind spot just to the right of centre which has slowed down my reading a lot, and was one of the reasons why I had to leave my job in publishing. It remains the same to this day.

How is it that that course in steroids had such an effect something like 25 years ago, and how come it hasn’t changed in all those years?

When I was diagnosed, the symptoms changed quite a bit over the next year or so which I’ve always thought must be as a result of the conscious mind’s attempts to address the problems of the unconscious. I’m talking about my physical brain, not my mental state, unless the two are now the same.

More apparent is my ability to walk a dog when I have much greater difficulty walking myself. Obviously, I would say, because I’m focusing on the dog more than myself. Is this reflected in the physical brain, or is it entirely psychological?

Also after diagnosis my whole body became numb over the course of two or three hours, working from the neck down. This was the only time I took time off work, as I was walking to work at the time and was worried what would happen when it got to my legs, so I turned round and went home. Over the day the feeling did come back to my whole body, but not to various internal parts, specifically my digestive system, my bowels – if they’re different from my digestive system – my penis and my bladder. There’s a general lack of feeling. I don’t get the signs that I am ready to urinate or defecate, and the muscles responsible for both don’t seem to work properly either. I take detrusitol for my bladder which helps a bit.

I suffer from erectile dysfunction which could be just my age, and I have gone to a relevant clinic for treatment. There is one peculiarity in that I recently had a relationship with a woman who I didn’t get to see very often on account of where she lived, but I did speak to her on the phone, and every time we spoke I produced semen. My thoughts at the time were not sexual, and there was no erection, but semen was always produced – we went on to have a good sexual relationship. My penis has very little feeling, I can’t tell when I’m urinating, nor could I tell whether I was erect or not, even when in my lover’s vagina (the relationship has ended - not because of the sex. She also has MS).

My major two symptoms are my left leg and my hands. I should know the name of the muscle in my left leg that hardly works at all, but I don’t. The test most clinicians do is to get me seated and then put a hand above each knee and tell me to push up against it as hard as I can. And I usually can’t reach the hand with my left knee which I’m only able to raise by about 3 inches; I have no problems with my right leg – at least I don’t think I do. These two problems came about when we moved house in 1999, and I overdid it. I stopped work in 2001 and became more sedentary, and my leg got progressively worse, and I was using a walking stick, but then some neuro physios arrived at my local hospital and worked out which muscles were responsible, and gave me exercises to do every day; they also told me to get rid of the walking stick. They did a great job. The problem with not having a walking stick is that people can’t see you’re disabled, particularly in hospitals and doctors’ surgeries, so, if possible, I park the car a reasonable distance away so that by the time I get there my disability is more obvious.

My brother, who is four years older than me, was diagnosed with ms three or four years ago, and his main problem seems to be his left leg as well, and I naturally told him that he must see a neuro physio, but he didn’t fancy that as he was afraid that people would think he was drunk, and therefore opted for a crutch which made his physical disability more obvious. I think he was terrified that he would get the same disability I have with my hands, as he is a musician.

I have a mild intentional tremor in my left hand, and a severe one in my right hand. I can do most things with my left hand, and very few with my right. Having said that, I used to be able to write with my left hand, albeit very slowly and drunkenly, but because we don’t really need to write with a pen any more, the absence of practice, I suppose, means I can hardly write anything at all now. Thankfully, signing cheques has virtually disappeared too. There are some strange things though I still do with my right hand, such as cutting paper with scissors, and I can carry things on a tray with both hands; I can only butter bread or toast with my right hand, a lot of it is to do with the angle my right hand is at.

I was once seen by one of the top tremor doctors in the world, or so I was told, and he got me to draw a circle with my right hand, and my circle was a flower with blooms all around it which represented my brain making adjustments for each false move, and I often find when I’m driving, if I’m not 100% sure which route I’m going to take, I go to move one way, and at the last minute I go the other way, and I often wonder whether that’s the same thing as the flower circle.

I do have problems with my memory – I forget things I do regularly. For example, there’s a zoom meeting I go to every Thursday at 7pm, but unless I see my computer reminder, I forget it. When I got a new consultant about nine years ago he sent me to the neurological hospital in Queen’s Square in London, and they tested my memory there, and I think they found that fault then, but I can’t remember! Recently I’ve been to Romford hospital where they did a memory test for me, and I passed all that, and had thought that they knew I had ms, but I happened to mention it after the test had finished, and the examiner said if they’d known that they would have sent me to a neurological centre. Can anyone remind me what the tests are for that kind of memory loss?

One of the other tests I had at Queen’s Square was the placement one, where they give you different shaped objects and you have to make patterns out of them, and I just couldn’t do it which was really frustrating, as I didn’t realise I had that problem at the time, but I’ve since realised the difficulty I have picturing things in my head, especially when a friend describes to me how they’ve changed their house or their garden, I just can’t picture it.

Hi, welcome to the group if you have just joined us.

I sometimes dont read lengthy posts, as I find it difficult to take a lot of info in. But I have read your`s in full!

The bit that really makes me wonder is when a consultant told you your MS is dead.???What on earth made him say that, when it obviously isnt?

I know myself and from others here, that memory loss is common in MS, but I`ve never been tested for it, so I dont know what a test would involve. Perhaps others will tell you their experiences with that.

Like many others, I also am doubly incontinent. I have an SPC in my bladder, which drains constantly, into a bag. Occassionally it by-passes and I wet myself.

With regard to the bowels, I do get a feeling down there, but dont know if it is wind or a bowel movement. Luckily most times I make it in time.

I am a full time wheelchair user and am hoisted for all transfers.

I dont think you mention any meds you take. There are many which could help with your tremors and other problems.


To be fair it is a lengthy post and sorry to say it can be a bit off putting trying to take it all in.

But I 'll try to answer some points.

Hot weather yep can trigger MS symptoms, it never used to with me but does now, significantly.

Did the sauna kick off your MS ?

In a way probably yes, but not in the sense that it’s the cause of your MS, it probably triggered an episode that was just there waiting to be triggered, in this case the heat ?

The steroid query.

Maybe over the years your MS has left more damage and the steroid now has little effect ?

Memory problems, again very very common.

“DEAD MS”, not a bloody clue what this means ???

Memory loss, again very common.

I get tested as part of my Simvastatin trial.

Personally I feel that everything you mention are all very common symptoms of MS.

I have SPMS, my sister has RRMS and my cousin also has RRMS, we can all sit down and talk about our own symptoms, but very quickly we realise that we are all experiencing exactly the same but maybe sometimes they are at different levels.

MS symptoms can be so difficult to describe to a non MS’er.

Sometimes when I’m trying to explain to someone, I can hear my words coming out and I think to myself I’m not making a sense but I know that my explanation is exactly how I feel at that time.

Thanks for both your comments. As far as medication goes, I take to detrusitol for my bladder as I mentioned; I was prescribed propranolol by different doctors, one for my blood pressure the other for my tremors. It works for the blood pressure but not for the tremors.

I’m using the Dragon system to write this. I have to tell it to ‘open dictation box’ as I can’t dictate to specific systems, such as email, and this one here, and hopefully, when I press the ‘transfer’ button, it will get in the right box. Here goes…

On communicating symptoms, I can’t with my brother, I don’t exactly know why, but I could with my girlfriend. Indeed, I saw physical symptoms in her which she didn’t, and doesn’t, recognise herself.

Interesting your SPMS and RRMS references – I occasionally ask my consultants what kind of MS I’ve got, and they say it’s just MS. Also, your family, and my brother – what is the current thinking on that?