Would very much appreciate any advice about the following:
I was originally diagnosed with RRMS back in 1999. Last year, it was reassessed as SPMS - the symptoms have now rendered me unable to work, but being fiercely independent I have not yet surrendered to the help of a carer.
The issue that causes most concern at present is severe tremor and lack of control in my right hand whenever I try to exert light pressure (…strong pressure seems to be ok so far!!) This means that writing - or even holding a pen - is no longer a realistic ability.
Coupled with speech difficulty, it makes communicating very difficult and sometimes even impossible!
Does anyone know of something that may help with the tremor, as I find this most troublesome?
The speech problems and tremor only started happening late last year (bad enough to have to give up work) after 12 years with MS.
(There are other issues, but I have been able to work around them!)
Best wishes to everyone,
SNAP. 1999 and RRMS I suffer from Tremors as well. I’m existing and that is that?
i know im becoming a bit of a sativex bore, but it really helps with my tremours. i used to wake up with my head shaking like mad along with my arms and hands. that has just about stopped.
i can also write short letters which i cannot do without the sativex due to my thumb shaking like mad when i hold a pen. transferring into my wheelchair is that bit easier too as it dampens down the tremour in my legs. i know its prescribed for spasms so i guess this is a bonus.
I to suffer badly with temors and my neuro put me on clonazepam and slowly increased it. It has helped a great deal, but unfortunately like you I find it difficult to hold a pencil/pen to write. I’ve tried great big fat pens and sometimes that works, not always though. I often drop things as I cannot feel them in my hands. Clonazepam doesn’t suit everyone but it’s worth a try. I also have SPMS. Hope this helps and wish you luck.
its not the same, but take a look at http://www.tremor.org.uk/ . It might have advice there that could help as this is their community.
Have you had a speech and language assessment and OT as you never know they may well have ideas to help you with everyday things.
I also am SPMS and suffered alot with tremors which affected my hands and head saw the GP and he suggested trying Propranolol which is usually prescribed for blood pressure (mine is fine) but also used to help with tremors. It really helps, I did try to come off them and dropped the dose to every other day, this is managable but if I leave them off for a couple of days the tremor returns. Maybe worth a try.
Thanks to all for your valued comments and suggestions.
Sadly, I’ve recently tried Sativex (after several unsuccessful requests to my GP) and after all the hassle it didn’t actually help me at all after spending 6 weeks getting used to it and varying the number of sprays. All that I experienced were negative side effects or no effect at all - so I discontinued after discussing with my GP.
I saw a speech & language therapist immediately I started having issues. Sadly, she didn’t help and didn’t seem to understand that the MS was causing the very small muscles (used to form words) to fail. I gave this up as a bad job.
Basically, so far all the therapies or medications suggested by my MS Nurse, GP or Neurologist have not worked for me. I’ve tried several complementary therapies over the years and continue to search for something that may help. I haven’t given up but I just wish something worked for me!!
At the moment, I don’t take any kind of medication or undertake any kind of therapy - bizarrely, this doesn’t make anything worse.
It sounds weird, but part of me believes that after 12 years of nothing working, my subconcious won’t let anything work in future! I’d love to prove that idea wrong!!
I’ll certainly ask my GP about Clonazapam and Propranolol - thank you both for those suggestions (…two of the few medications I haven’t tried yet), and I’ll certainly take a look at the “tremor” website recommended.
With many thanks for the thoughts and best wishes to all,
Do let us know how you get on. Wish you luck.