Last reply 9 months ago
Tremor

I was in and out of hospital last year and whilst I was there I developed a tremor in my right arm and right hand, is there any medication for this. I have Secondary Progressive MS and I had the Lemtrada Infusion last October. I can’t write anymore or eat properly. Someone please help.

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vixen
9 months ago

Hello @huma_javed, are you having regular access to the neuro team of MS nurse? There are definitely medications that can help alleviate these problems. If you read the other posts around yours, there is a new drug which has been approved in the U.K. for folks with SPMS, the first DMD ever. Make sure you keep pushing to be seen and heard, it is your right to access the best care and attention that can be given. Hopefully, someone else on Shift will recommend something that has worked for the x


merfield
9 months ago

@ huma_javed, my sympathies. I too have the same problems. I’m ppms which is almost the same as SPms. But I still get out and about and have friends visit. Have you discussed Ocrevus with your neurologist? You might be a suitable candidate. I’m too old and am in a wh/ch but you’re relatively young so ask away. You have to be persistent with the NHS to get noticed. They’re so restricted by lack of money. Have you looked on The MS Trust website or you could call them, they’re very nice and helpful. You’ll be in good company on here. xx


huma_javed
9 months ago

@merfield thanks for giving me the name of the drug but I won’t be able to have it because I am having Lemtrada. I got diagnosed with SPMS over the phone by my neurologist and his words still ring in my ears “you’re just going to get worse”. I couldn’t stop crying when he told me. At that time I was only using a walking stick and I was quicker on my feet but not now I use a wheelchair and more often than not I am sat on my recliner 🙁


mlgilber1
9 months ago

I take propranolol for tremors. Thankfully mine have gone away now so I only take it as needed when my symptoms are flaring, but it has always helped with my tremors. I remember I developed a tremor in my head and hand and it was super frustrating and embarrassing, but the propranolol would calm it right down.


peterfrancis
9 months ago

@huma_javed

I too have SPMS and experience Tremors in my left arm/hand and sometimes on the right side also.

I was prescribed Gabapentin and Baclofen by my Nurse and it has helped to calm them down a little but they still occur just not as strong.

Will be interesting to see how this Siponimod Drug works for SPMS.


merfield
9 months ago

@huma_javed, maybe if you are unable to walk you wouldn’t meet the criteria for Ocrevus but it’s worth asking. I spend afternoons in my recliner too. On sunny days I stay-in my wh/ch which is motorised and get onto the terrace outside down a ramp. And if it rains I can go back inside. Social services would be worth contacting if you need a ramp. Try not to get down hearted; we are all here to help each other through the difficult times. xx


merfield
9 months ago

PS How are you getting on with Lemtrada?xx


huma_javed
9 months ago

@merfield I’m getting on fine thanks but sometimes my balance problems are worse ☹
What medication do you take? xx


merfield
9 months ago

@huma_javed, I’m not on any medication for ppms. My balance has gone; I have to support myself even sitting. But I’m managing ok. xx


vixen
9 months ago

@huma_javed, I really hope you are finding support from using Shift. We are all different ages, stages and locations united by the same thing. We are all MS Warriors even if we don’t always feel it! I am haunted by the thought of ANYONE being told over the phone that they’re just gonna get worse, that’s pretty unforgivable in this ‘civilised’ country of ours. Thank goodness for people like @merfield, whose spirit is awesome 😍


merfield
9 months ago

@vixen, thanks for your comment. We are ALL awesome for being able to cope with the Beast. I really think that. what I dread, and I fear it’s coming, is not being dexterous enough to tap my Iphone (always attached to my left hand). It keeps me in contact with the World and Life. And this site is a Lifeline- it really is.


stumbler
9 months ago

@merfield , don’t let the thought of a potential dexterity problem concern you regarding losing your connection with the world. Voice activation/control software has now matured and would be an answer.


mlgilber1
9 months ago

My balance was awful and I needed my walker to go anywhere so I had asked my neurologist for ampyra. Right when I was starting that medication I also started Ocrevus and two months after starting my balance was great and I haven’t needed my walker since January. I think my balance improved so much from Ocrevus because I’d miss some doses of the ampyra and didn’t notice a difference which most people do if that medication works for them so I stopped that one completely. Also, my physical therapy sessions were up for the year, but my balance has still been great and I still haven’t needed assistance walking. Maybe just asking about possibly switching to Ocrevus or if in the future Lemtrada isn’t working I know people who have gone on to Ocrevus after their two rounds of Lemtrada. If you want something to help with balance and mobility I know ampyra helps a lot of people. Ampyra isn’t always an option if a person doesn’t qualify or here in the US a lot of insurances won’t want to cover it so people will usually get a script and go to a compounding pharmacy to get 4AP and it works just as well. Best of luck!

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