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Newish on here

Hello everyone, i was a member of this forum when i was first diagnosed, then i wasnt and now I have joined again. I now have secondary progressive MS and I dont know why i am surprised but it getting worse. so sorry to start off with a question, but the jerking/spasms.twitching are driving me insane. I have tried to keep off any meds until i need them, but that time has come. so i guess i need some baclofen?? How does everyone get on with it??

And now Ive started asking questions I suspect Im not going to stop! Ive decided after a lot of thought , to go for medical retirement froma job i love in the NHS. Has anyone here had tier 2 ?

looking forward to joining in.

Carolyn

Hi Carolyn

Welcome (!) to the forum.

Baclofen is generally used for stiffness so while it often helps with spasms, it’s not necessarily going to stop spasms / twitching etc.

I use a combination of Baclofen and clonazepam for spasms. I’ve been on Baclofen for years but clonazepam only for about the last 6 months or so. I think the Cloneazepam is brilliant for spasms, although many people don’t like taking a benzo-diazepine because they can be habit forming.

There are many other drugs for similar problems and different combinations suit different people. What has your neurologist recommended? If anything.

Sorry I can’t help with medical retirement but I’m sure others will give you their experience.

Sue

cannabis can be useful

Hello sue, Thanks for the welcome. I think my consultant has mentioned baclofen, but Ive stubbornly refused all meds so far. Ive got an appointment in 2 weeks, and im going to listen to him this time. The side effects of baclofen sound really scary, havee you found it ok?

Carolyn

I hadnt thought about that, but I really will bear that in mind. Thankyou

Carolyn

Magnesium can help ease problems with spasm & cramp and worth trying before the more serious drugs.

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Thankyou, is this prescribed or over the coumter?

Carolyn

You can buy magnesium over the counter, as it just a beneficial mineral. I get mine from http://www.healthspan.co.uk/products/magnesium, but sure there are plenty of other options.

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I’ve never had any side effects from Baclofen. They reckon it can make your muscles weaker. It’s possible this has happened, but I’ve reduced the amount of Baclofen I take since starting Cloneazepam and haven’t had any stronger muscles, so I don’t think it’s affected me that way or not too much.

The thing to do is start on a really low dose (ie 10mg maybe twice a day) and see if you notice any side effects. And keep a diary of how you feel re stiffness, spasms and weakness.

Sue

Hi Carolyn

I’ve been taking 3 x 10mg of Baclofen for about 10 years and find they do help me with leg stiffness. Am thinking of increasing to 4 x a day as my legs are giving me so much grief,

I too am going through Early Retirement due to my MS which over the last couple of years moved from R&R to Secondary Progressive. I worked in Local Authority for 26 years and am just coming to the end of my 6th months on full pay!

But It is all moving so slowly.

I was assessed by an Independent Dr back in December who recommended I be retired on Teir 1 as I would be unable to return to work.

Don’t know why this process takes so long??

It is such a relief not having to drag myself into work and can’t believe how quickly the last 6 months have flown by!!

Hope you are getting support from the NHS re: your early retirement?

Sue

Im at the end of full pay too… yikes! Im going to go back foir a couple of weeks, just to prove to myself once and for all I cant do it, i know what the answer is though. In the NHs tier is 1 the level where you can work if you want to. and tier 2 is where you cant do any work at all,I really want tier 2 as you get more money, and i really dont see what job i could do;Im a midwife who cant stand up straight, cant hold a baby, and cant see properley, not that useful really!

They have warned me it takes a long time, but some of that is the delay in getting the information from the health professionals. I have got amazing support, and am lucky enough to have a good friend who is a full time steward for our union, so I am taking her out for lunch on monday!

I went for some financial advice last week with a charity, They were amazing. she thinks I can claim some ESA on top of my half pay as it is based on National insurance contributions. she also told me what to say to bank/ building society and John lewis card dept. They have all been SO helpful and I can defer payments until retirement comes through.

The thought of retiring and not being a midwife any more is very scary! i thought Id be working till i was 65.

hope you hear soon, and thanks for the info on Baclolfen.

best wishes

ca|rolyn

Thanks for the info. Ive just been out and bought a months supply.

will let you know

Carolyn

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Thanks for the advice. Ive got a consultant appt next week, am going to discuss it then

Carolyn

Hi Carolyn, I have been having v stiff spasm legs for a few days too, ouch! I do take baclofen, don’t have side effects, just a bit sleepy at the start. Eating foods high in magnesium not helping much, so I might try Derek’s suggestion too- it’s not easy getting in and out of bed with rigid legs! A physiotherapist at the hospital suggested static cycling? Dawn

was that the magnesium or the cannabis?

The physio i saw suggested trying to do everything normally like standing up and trying to balance as we get into bad habits, /then suggested hydrotherapy which wouldnt work for me. so Im going to try neuro yoga in Nailsea just to see if it may improve my balance and core strength. Its good to hear so many people take baclofen without side effects as the in fgo on google sounds really scary.

#BW Carolyn