What treatments have you tried for MS? What works for you?

Three and I would say Gilenya is the one that has suited me the best and is the one I'm still on :)

Hi all,

I started off on baclofen (have SPMS) but this soon made my symptoms worse so now have been on diazepam for about 1 1/2 yrs.  Also have been implementing with naproxen, as and when needed.  Also taking 4000iu Vit D daily (as an oral spray), try to eat sensibly and stay as physically active, as possible and exercise most days.  I have also found attending a Neuro-Muscular Centre 1-2 a week, using the Fitness Room (under Physiotherapist supervision), "Listening Program", Massage Chair and 1-2 different exercise classes.  Last but not least, also have Aromatherapy Massage and Reiki, about every 3-4 weeks which has helped me manage my multitudinous MS symptoms.  Unfortunately, have been experiencing muscles spasms in 2 "new" areas for past 10 days and current regime doesn't appear to be effectively dealing with this, so plan on e-mailing my MS Nurse for any suggestions (when I get the time and energy to do this)!.  Wishing everyone well, Ann x

anndnneede

@Yank34 do you think the reiki really works???

Sorry it's taken so long to reply.......never saw your message!  Yes - personally, really have had some amazing results from Reiki! xx

I do reiki too @Yank34 and it does help! a lot :) Now I am taking fampyra and I think it is working well :)

Really pleased to hear that and hope the fampyra continues to work!  I am currently having Acupuncture (NHS funded) and although my 4th treatment didn't seem to have much effect on my MS (may be due to currently having a viral infection, which almost always adversely affects the MS), after my 3rd treatment - had 4 DAYS without ANY MS symptoms.......something never experienced in more years than I care to remember!!!!!  Keep up the good work Jen.......I have faith that we will ALL get through this "journey", stronger and wiser people! xx

Hello @Yank34 I am so happy to hear that you had 4 good days :) it is a blessing to have at least one, so 4 I can imagine. Do you feel the acupuncture works? How did you get the NHS to fund it?

Stay strong x

Hi again Jen, always soooooo good "talking" to you!  First discovered that Acupuncture was available (in Mid-Cheshire) when my husband's Prostate Cancer Nurse (who I actually, serendipitiously completed my Nurse Training with!), mentioned that Acupuncture was available at a "satellite" centre of our local Hospice.  She suggested this service may help his horrendous "hot flushes", which is a side effect of his hormone treatment, subsequently sending them a referral letter.  My husband started having Acupuncture about 4-6 weeks after he as referred and after attending his first couple of sessions, asked if Acupuncture could help with MS symptoms and she said Acupuncture has been know to help some of MS's multitudinous symptoms.  She then suggested I ask my GP to be referred to the Centre for this, which he did immediately (Bless him!).  I believe the initial Acupuncture involves 6 weekly sessions but may be "extended", possibly depending on the current demand(s) on this service?  Unfortunately, the miraculous 4 days of having no symptoms, came to an abrupt stop when my MS really "came back with a vengeance".  Discussing this via e-mails with my wonderful MS Nurse, this first appeared to be a relapse, the first I ever had as I've had daily MS symptoms for probably about the past 3 yrs(which can happen even with SPMS) but when I subsequently developed a pretty bad cold (caught from my husband!), it appears this viral infection was probably the cause of the "flare up"......people with MS frequently experience a sudden increase in symptoms when they develop any kind of infection (including UTIs - Urinary Tract Infections, which can be totally asymptomatic - in other words, without any apparent symptoms).  Neither my MS Nurse nor my GP were aware of this possible treatment option, so forever grateful to my past colleague!!!! It may be worth your while to pursue if there are any alterative therapies available in your area which can be NHS funded?  Likewise, the Neuromuscular Centre I attend, about 20 miles away, is also, at least, partly funded/subsidised by both my local Health Authority as well as a neighbouring one, resulting in some of the facilities being "free" and other services/treatments being much more affordable than in the private sector.  I now feel I have basically recovered from the viral infection and although a 2 week holiday in Florida (10-24 Nov) did take a bit of a toll on my MS (travelling always does but figure it's worth it!) and my MS is back to its' "usual self" which I can usually "manage". Hope this helps and always here for you (and anyone else).......after all, we're all in this together! Hope you are ok and looking forward to "talking" to you again.

Ann x  

Hey @Yank34 catching up cause I had some bad days... It sounds really interesting the acupuncture, I think I'll talk to my GP.

About the flare oh god I do totally know what you mean, I have a little girl, she is my sunshine, but kids are bacteria sponges, I try to keep her as healthy as possible so I can also keep as healthy as... but at school with all the other kids sometimes it is impossible, either I keep her on a crystal ball lol or I face reality, and that is that she sometimes gets home with the flu and obviously it is hard for both cause I have to take care of her but try to stay as clean as possible so my MS doesn't flare up like a building in flames... well such is life for the moment, but we learn with every step right?

How is your husband by the way?

Have a lovely week

Sorry it's taken me awhile to get back to you........really hate to admit it but my MS has become a little more problematic since its' "flare" but fortunately still independently mobile but more pain, spasticity, slower cognitively etc but that's ok - I just need to start exercising more and "adjust" to this new situation!  Considering my MS probably started almost 38 yrs ago, sooooooooo grateful I am in as good as shape as I am...........there are sooooooo many people both younger than myself and have so many more problems.  Thanks for asking about Dave - he is continuing to have physiotherapy 2x a week (to build up his flexibility, strength etc in his left leg - total knee replacement last June) and will continue on his 3monthly Prostap 3 injections possibly til about April.  His prostate ca (like many reproductive cancers) is receptive to hormone treatment and his PSA has been basically non-existent for approx the last 6 months - we are quietly optimistic and hoping his horrendous hot flushes should stop/calm down after he completes his hormone treatment.  We will soon finish our course of acupuncture (? Probably mid Jan - due to bank holidays and personal holidays) and believe max no of sessions "funded" are 6 or 7) but may be able to offer us future "top-up" sessions?  Last acupuncture session (last Wed) appeared to give me noticeably a little more energy but again, only seems to last 4 days?  Regardless, ANY respite, no matter how short lived, brings hope!!!!!  Sooooooooooooo empathise with anyone with MS - no matter how strong, determined, positive etc we stay, it does "get to me" but then need to remind myself there are so many other medical conditions far worse and there will always be people less limited and more limited than myself, so think myself lucky!!!!!  What are your MS symptoms and how long have you had it?  I'm always full of questions and of course, the more I find out about anything, the more I realise I always need to know and understand more!!!!!  Thinking of you and your family with great affection and hope you all have the most marvelous Xmas ever!!!  Ann x