Quote First timer Hi, I have been diagnosed with MS for 18 yrs and have had secondary pregressive without remission for 18 months. Since then the MS has worsend considerably. I have a superpubic catheter, a peg for feeding and my mobility has worsened. I feel that this has happened all very quickly and am worried about the future. My neurologist has told me that disease modifying drugs are out of the question but has put me on morphine, Tizanidine, cocodamol, Oramorph, zolpiden, lansoprazole, pregabalin, amitriptyline, buscopan, citalopram, solife nacin and capsaicin cream. I am worried for the future as my life has changed drastically over the last 18 months. Can anyone suggest what more I can do to help myself and offer advice about the drugs I am taking or offer alternatives? Also… My pain consultant has also offered lignocaine infusions. Has anyone heard of this? I have tried to research this but haven’t found much info. Since I had the superpubic Cather fitted in November last year I have suffered terrible spasams in my bladder. Drugs haven’t helped so now I have been offered Botox injection into the bladder approx 30. This will paralyze the bladder. Has anyone heard of this as again I haven’t been able to find much info? Sorry for this epic but I am new to this and am desperate for help.
Hello & Welcome,
I’m sorry to say that I can’t give you any advice but am sure that others on this site will put you in the right direction.
In the mean time I send (((((HUGS)))) and hope you get sorted quickly.
Janet
I was diagnosed with MS in 1996. Things were going wrong with my health, slowly at first and then I was told that I had secondary progressive MS about five years ago. I was getting about in the house using a four wheeled walker at the time, recommended by the physio dept. This was far from ideal. I have now been issued with a powerchair, which I am in fulltime, we use a wheelchair accessible car.
I have been receiving botox injections for about five years, it normaly lasts about 10 months but I no longer need to wear pads, I can leave the house without worrying too much. I self catheterise when I feel I need to use the loo.
I take: Tramadol when needed, gabapentin, baclofen and amitriptyline. My pain consultant prescribed ‘lidocaine 5%’ patches which I also use when needed. I find these helpful when I get localised pain, such as in my calf muscles and my heels.
Anything is worth trying, MS differs for everyone and so will the meds we need to take. Good luck
Hi and welcome to the boards. I am really sorry to hear how badly your MS is affecting you.
You have got more than your fair share there.
You are on a lot of drugs and i am unable to answer your questions about the, except to say I also take baclofen and amitriptyline. I find they help around 75% of the time.
i was once given oromorph, but had to keep increasing the dose to get any relief. i weaned myself of them with paracetomol.
About 3 yrs ago, I had an in-dwelling catheter, but had a lot of problems and after 5 months had it taken out.
I use pads and oxybutynin. Again I get about 75% relief from accidents.
I have heard that botox is good for bladder problems.
luv Pollx
l am also spms and have been for 30yrs. l have had a supra-pubic catheter for 18yrs. l do take amitriptyline at night 25mg.
l also take ldn - which has made a big difference to me and l use Sativex spray for muscle spasms. My bladder goes into spasm when the nurse tries to change the catheter - every five weeks. lf l take a spray of Sativex before the nurse comes it calms it down - the nurse says she should have a spray as well. The only trouble with botox is you have to self-catheterise - and that can be difficult if you are not very dexterous. Also, it can introduce more uti’s. l did try baclofen and tizanidine but they made me so weak and feeble that l found l could not stand up - let alone walk. And l did not like the way it made my brain feel so fuzzy. l take vitamin b12 and vitamin d3 10.000ius - also magnesium.
There is a good website about sp catheters - l only found it recently. lts called Streetsie - they are a group of disabled people who are all in the same boat - and offer lots of advice. Many of them have ms. l think you get the best advice from those who have ‘been there - done that’.
F.