so stiff

New diagnosis and before diagnosis
1

Hi ereyone

Some of you will know my history, basically following a eally bad three monthe at the end of last year, I have still not fully recovered. I still continue with right leg weakness (feels like a spinal anaesthetic is wearing off) slight weakness and tremors to right hand. The night time stiffness/prolonged painful muscle contractions also continue.

Anyway I have got used to having calf pain and tightness in the mornings along with tingly feet first thing, but the stiffness in both legs is contuing to get worse and now I am struggling to get up and move around after even a few minutes of sitting. The problem is I am unable to walk very far because of the weak right leg and I seem to get intermittent foot drop on the right, but if I rest I am seizing up. Showers/baths etc make the stiffness worse and I am trying to stretch but it’s not working.

Could this all be MS realted? These issues have only started since September but whlie the buzzing/weak arm have improved, my legs suddenlky seem to be getting worse. Any recomendations would be fantastic even if its moral support as its much needed at the moment.

Thank you

Debbie x

2

Hi Debbie,

Muscle stiffness, AKA spasticity, is one of the most common symptoms of MS, and for some people, one of the most debilitating.

It’s more common in the lower limbs, but can affect any muscle.

I would suggest you need to be on some kind of muscle relaxant.

The usual first choice is Baclofen - which I use very successfully - but there are others available as well.

I’m sorry, I can’t remember whether you’re already diagnosed or not? In theory, it should be possible to be prescribed something for the stiffness (spasticity) even if you’re not, as the criteria is only that you definitely have the symptom, not what the underlying cause is.

Tina

3

hi debbie

i am not formally diagnosed as yet but have the stiffness you describe, i can only be sat for a short period of time and im quite stiff getting about again but the more i move about the more pain i get so theres no real answer for me, i try to go for a short walk daily now as im worried about seizing up completely! my fatigue is quite good at the moment and it seems that the more pain there is,the less fatigued i am and vice versa, it might be just me being weird though!

im going to see doc on friday so may ask him for something for it.

hope you get some relief soon.

best wishes

mandy xxx

4

I just wanted to add that a referral to a neurophysio might be really helpful. (Your GP can do the referral.)

Baclofen can be really effective for spasticity - please ask to try it!

I hope you can get some relief soon.

Karen x

5

Hiya Debbie,

Sorry for making you rehash the whole sorry saga. They still have no way you can search someone’s earlier posts on here, and I can’t remember anything, so between the two things, it’s like starting again from scratch, even when I know someone’s posted before - and sometimes even when I replied to it!

All the rubbish you’re having is very similar to mine, when I had (presumably still have, but healed a bit) a spinal cord lesion.

It’s quite rare to have cord lesions without brain lesions, but not impossible. I’m assuming you had only brain MRI, but not spine?

I know I’m not Karen, but I hope she won’t mind me replying that yes, you can see a neuro physio privately - I did! I asked my neuro to recommend someone (I think sticking a pin in the Yellow Pages could be a bit dodgy), but I didn’t need a referral - you can ring up and sort it out yourself.

My session cost me £50, and I got a comprehensive assessment - about one hour - and a custom set of exercises, tailored to me and the specific problems he’d identified. They were designed so I could continue them myself, unsupervised - I didn’t have to keep going back every week.

I think, for the sake of £50, it’s well worth it to bypass NHS queues. Physio is not something you can really wait months and months for - you need it when you’re having the problem.

I’m not very good at “making a fuss”, either. I think that’s why I wasn’t diagnosed for so long. I don’t think it’s that I’m shy. I just think, like you: “Oh, it will probably go away”, or “Oh, it’s probably nothing”. I went through phases of: “It’s probably my bed…my chair…my shoes…my age…my hormones”, before reluctantly getting to: “I’m probably ill”.

Duh!

Tina

x

6

Hi missymoo and everyone else,

Sounds MS related. I am only classed as “probable PPMS” due to CIS , however, in 3 years I have gone from running a marathon to not able to run up the stairs! I have now got muscle stiffness and spacticity and the doc gave me Baclofen but because I also have weakness in my legs, I was a bit concerned it would make me even weaker so didn’t take it. Having said that, due to the spasms getting worse, I think I may give Baclofen a try , after all it’s worth trying anything isn’t it? I am also quite interested in finding out about LDN. I think, because I am not actually diagnosed that I have noone to talk to about these things. My Docs surgery are no good, the don’t give a damn, they are so busy and I dont even know the docs there because mine left a few months ago. The Neurologist just says - see you in 6 months and the physio has been great but I think she has gone as far with me as she can. PS I’ve got footdrop too. Sorry, it’s not all about me I know but sometimes it’s good to get it off your chest, even my other half doesn’t know what to say or even ask how I am! Anyway good luck and maybe ask the doc for Baclofen and see if it helps.

Regards,

7

A lot of hospital rehabilitation centres have them, but my local health centre also has a couple based there. The referral time to my local place is pretty good and once you’re on their cards, you can call them directly. I guess where they are based probably varies across the country. Your GP should know though.

Btw, it’s actually not that uncommon to have only spinal lesions - I once read a figure of 25%, but I think that’s probably too high. Maybe 5-10%? (but that’s a guess!)

Karen x