Last reply 1 month ago
Spasticity – great word!

Still in the throes of diagnosis.
I was prescribed Baclofen for my left leg but reacted badly including losing all balance and having double vision. Then moved to Gabapentin. My left leg has now swollen and I cannot wear my trousers let alone shoes… What next? Your experience please…

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simone2
1 month ago

have you tryed magnesium tablets? i take 650mgs and use magnesium spray


terrier58
1 month ago

I take magnesium but not that much. Thank you. I’ll try upping my dose!


cliff
1 month ago

The only thing that works for me is putting my feet up higher than my heart for a hour or two each day. A hospital bed works best.


terrier58
1 month ago

Thank you Cliff! Tho’ I’d rather avoid hospitals…


stumbler
1 month ago

@terrier58 , I do hope that you’re keeping your GP up-to-date, especially about the swollen leg!


marlene_mansell
1 month ago

I dob”t think l’m doing thiisrifht ca sone tell me how to add to others their respones if l don’t k ow l’m just going to hop out of this


terrier58
1 month ago

@stumbler. I am. Although I’ve been told not to expect a response for the next three weeks as she’s on holiday!


itsmewithms
1 month ago

You don’t need to be in a hospital to get a hospital bed 😉 we have an adjustable bed as my husband had Lyme’s and to keep fluid from building up in his spine he has his side set in an unusual inchworm type of setting, I could never sleep like that ;-0 but it is what makes him comfortable. I can also set my side to elevate my feet and head which sometimes makes me more comfortable. That is the good point – it is adjustable to what I need at that time.

I agree with Stumbler a GP should have good advice about a swollen leg. I also didn’t feel that swell using Gabapentin to manage nerve pain last year. It helped but it seemed to peak and subside quickly. That make sense as it basically delivers over a 4 hour window. I moved to the extended release version called Gralise and it worked better for me.

Hopefully they figure you out…each of us is a unique case as MS is due to lesions that for all of us may be in different places. So while we all have the same disease we are all different. You will likely have a DMT prescribed to attempt to stop progression and if you are having an active flare I would think Sol Medrol would be considered for a short period to reduce inflammation. I suspect you are in this process: https://www.youtube.com/watch?v=0csvVXatlFo&t=16s

But Dr Boster has some great information to learn from and the more you know the more and better questions you will ask 😉 and as you can see this site helps a lot and is very supportive. Hopefully they figure you out and you feel better soon-
The pain it was prescribed for has gone away so I did not renew my prescription and am now on Amantadine to help with afternoon and evening spasms and spastacity. This seems to help so sticking with that-


terrier58
1 month ago

@itsmewithms
Thank you for your advice.
I will invest in an adjustable bed.
Covid-19 has meant the suspension of so much medical assistance here in the U.K. (and globally)
My GP is on holiday
No MS Nurses are being allocated
My Neuro (after a twenty minute telephone consultation and no face to face) is worried about his budget and as I’m 55 says I’m not eligible for DMT
In despair I have been to see a private neuro who suspects PPMS. He listened, advised and pointed me in the right direction. Now I need my original neuro to refer me for a gandolinium enhancing MRI and a lumbar puncture. I’m not taking no for an answer. Budget or no budget.
I’ve found the Dr Boster YouTube videos really helpful. Thank you


gandtgirl
1 month ago

Really shocked to read this. I am 58 and have PPMS though my the consultants are now calling it active progressive. My consultant had no qualms about prescribing Ocrevus once my MRI had shown that the disease was active. He called it an ‘insurance policy’. Without it he expected me to have to use 2 sticks to walk within 5 years before heading for a wheelchair somewhere down the line. Hopefully all that will be slowed down.

Push for a diagnosis and, if you fulfil all the criteria, for Ocrevus. I know that different regions of the country have very different budgets. Maybe i am lucky with where i live.

First full infusion in 2 weeks’ time. Good luck!


terrier58
1 month ago

@gandtgirl I’m pushing. Not taking no for an answer 😉 On this one I’m prepared to be unpopular and have this afternoon constructed a letter asking why when I appear to reach criteria for Ocrevus has he, my Neuro, written me off after one telephone consultation. TBC…

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