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This is a weird symptom...anyone else?

Hey, Has anyone else had or has this symptom? It started when I had a relapse about 6 months ago. It’s hard to explain but I’ll do my best. Whenever I go from sitting, say on a chair to standing and start to walk a few steps with my crutches, within a few seconds I get a funny feeling, like a heavy head on the right side, my right arm and hand tenses uncontrollably, like a spasm, and my right leg joins in just for fun! it also has this wave of a spasm and I literally am just glued to the spot because none of these areas will work with me. I also, as the heavy feeling comes into the right side of my head/brain, feel really lightheaded (but heavy if that makes sense). I don’t feel like i’m going to faint or anything, off balance- yes, it just makes me feel like i’m drunk for several seconds. The spams fade away as quickly as they came, and the heavy head can sometimes leave me with a headache if it happens to many times in the day. this whole scenario also happenes if I laugh heartily, which really isn’t funny! I’m guessing that this is a brain lesion, but just wondered if anyone else has ever experienced this to some degree? It makes answering the door or the postman knocking to deliver a parcel, one HUGE nightmare - by the time I get up out of the chair and my brain’s doing it’s funny thing, I’ve come to a grand halt in the hallway and eventually got to the front door, the postie has gone! GRRR. Or I come to an embarrassing halt in the dentists/vets/doctors waiting room, and trying to explain what’s happening to bemused staff is Soooooo embarrassing.

see your gp and get your blood pressure checked. ask him/her to check it as you stand up.

you may have postural hypotension. i have this if i stand up too quickly, look up or look down,

my gp noted that my sodium levels are low and told me to eat more salt.

better get it checked before you faint and crack your head open (like i did)

carole x

Hi Carole, thanks for your reply. I think you misunderstood how I explained it (it’s a difficult one to explain really). I don’t feel faint when I stand up, I get the spasm in my right arm/hand and right leg/foot and at the same time I get a funny heavy feeling in my head on the right side, which is akin to feeling a little drunk for about 10 or so seconds. I feel I need to sit back down again, until the spasms stop bacuse it all makes me feel unbalanced. When the ‘episode’ passes, I’m ok again. I have noticed that after it happens once and I sit back down, it won’t happen again when I immediately stand back up - told you this is a weird one! lol

nothing sounds weird with this weird disease!

I know exactly what you mean, just done it about 30 mins ago, infact im doing it alot at the mo (left side always, but right leg likes to join in occasionly). i stand there rigid and cant move till it stops but then i am even more slower when walking for awhile.

I get the `normal’ spasms alot too but this is new.

Lets face it, this ms is one weird illness.

Lisa

I get the same thing - my neurologist explained it was because of the pathways of the nerves through the brain. He explained that its the signal trying to go back through the damaged nerves and the brain trying to reposition to another non damaged nerve. He explained that’s why it’s important to keep doing the cooksey cawthorne excersies as it helps to reprogramme the brain to new undamaged pathways and reduce the amount of times that the brain misfires to the damaged route. Hope that makes sense not sure i explained it as well as I could coz I’m shattered tonight! Karina x

Oh wow, thanks for explaining that Katrina :slight_smile: I’ve never heard of the cooksey cawthorne exercises?, what are they?

Have you got a neuro physio? You could ask the gp for a referral to a physiotherapist who can show you how to do them. Or if you google them it tells you how to do them and the movements. Just make sure that someone else is there when you do them as can bring on a bit of dizziness at first but perserverence is the key as it helps a lot with the repositioning of the Berber pathways and reduces those feelings

No I don’t have a neuro physio and neither am I seeing a neuro - I like to avoid them and GP’s like the plague! lol. I’ll google the exercises and see what they’re about then, thanks again :slight_smile:

Karina, thankyou for explaining why it happens.

I went for my first physio on friday, only to find i was a month late. yeah i had put it in my diary wrong.

they were very understanding but i had to go to the neuro reception to get them to fefer me again.

going for leg and drop foot but will tell them about this problem and ask about the exercices.

better make sure i put it in my diary right this time!

Lisa

Hi lulu- mine kicks in randomly at times for no apparent reason and nothing specifically that triggers it and it can last for a few seconds or a minute - but it’s particularly annoying at night when I change from lying on one side to the other side. My neurophysio said that if there’s particular movements that trigger it then to practise those movements over and over again until eventually your brain figures it all out. So I’m practising lying on the floor rolling from one side to the other repeatedly and it seems to be making a difference