Living with the effects of MS

That's the spirit ganganmz!  I'm sure so, so many of us have days like you are having and they are sooooooooo not good!  Myself and I'm sure a lot of others in this position are all hoping this horrible day you are having will pass/change as soon as possible!  Although I do my darnedest not to give too much credence or "power/strength" to my symptoms, think it is only natural that when we are having a really bad time it does make us angry, frustrated and all sorts of negative emotions - think this just makes us human!  Hopefully, not knowing you or any of us are on own, on our up and down journeys and symptoms will "go" as well as "come" SOMETIME, will help keep us all NOT giving in to our MS but just try to work with/through it.  Days when we have "negative equity" just means we need to do as little as possible, have no real choice but to accept it (although this something I need to constantly remind myself!) and no there will be another day/time, when we can hopefully be more "ourselves".  Always here for you and everyone else - we're all in this together. Ann x

How are you all feeling today? I feel better, started new medication and diet and it is helping though don't want to talk much about it till I am sure it is really working.

Thanks for your words Yank34 I am convinced I have to fight and stay positive.

Having a pretty good day (after having 2-3 pretty bad ones but that's MS) thanks ganganmz.  Have been going to a Neuromuscular Centre (used to be called an MS Centre) but now offers support, resources etc for Parkinsons and any other neurological conditions for the past few weeks / ?months) - so lose track of time!  Have tried a "Listening Program" laying on a couch, listening to music/sounds and through headphones and wearing goggles (choosing red, blue or green "colour" and intensity) - also used in the US and Holland - developed by Audiologists.  Also trying different exercise and relaxation therapies and now taking 4000 iu Vit D oral spray (perhaps D3?).  Trying everything to maintain/regain as much control/empowerment as possible.  Confirmed with MS Nurse the other week I have SPMS, which I have always thought.  Keeping EVERYTHING crossed that you are on the right track and agree with you re: not talking too much about new treatments yet.  Good to hear from you and always here for you!  Definitely keep positive - you'll get there.

That sounds like a lot of experiments and I like that you are tring everything to be better @Yank34. Good to hear that at least you have an accurate diagnosis of your MS, I think it is realy important.

I am doing better with the medication and the diet in which I am not eating any meat or dairy products, nor chocolate which was really hard to leave :(, but it is helping me a lot!!!

How are all doing today??

Hi again everyone.  Just came home from the 1st wedding (civil service) of 1 of our Goddaughters (we have no children but have a tendency to sometimes "adopt" people who comes into our lives and when it just seems the right thing to do!  Her 2nd wedding will be in Romania (Transylvania) and include all "the kit and caboodle".....an all day and all night (finishing about 7am in the morning!) and will be a traditional church (Romanian) wedding!  All went well re: my MS (made sure I took diazepam and naproxen on time) until about 10pm ish when all my limbs and back starting to go into spasm!  Finished my glass of wine in 1 fell swoop (drink very little alcohol although have found it is a good muscle relaxant), took my meds and left the room to walk around the venue's grounds until the pain and spasticity began to recede (which took almost an hr) and facilitated me staying up with everyone else until about 1pm when everyone was beginning to fade!!!!!!  Although I sometimes people I don't know that I have MS (basically so they don't think I'm drunk or there is something "wrong" with me if I mov, talk or act a bit odd) and received the welcome observations from some of them that they would never have known this.  Like many who need to learn to best manage their energy/activities, made sure I "scheduled" the next couple of days to "recover"!  Hope everyone is doing ok????  I know it's not always easy to remain positive when things aren't going very well  I.e. When we are experiencing "negative equity", pain, limitations etc, but hopefully, these times will pass/change (hopefully, like the British weather!) and keep hoping the sun will come out again and that always helps me/makes me feel brighter and better!  Take care everyone and thinking of you all. x

There are two major issues with my SPMS that I find very difficult to talk about so would welcome hearing related experiences of others. One is irregular bladder and bowel function; the other is sexual dysfunction. I have controlled my urinary problems by having a suprapubic catheter fitted. Downsides of this however are the necessary but painful catheter changes every 6 weeks and the annual injections of botox in the bladder to reduce sediment and stones. Unfortunately the botox does nothing for my facial complexion although my bladder is no doubt ravishing!  The catheter changes are done by my district nurse, using anaesthetic gel to limit the pain, but the botox procedure demands overnight surgery by my neurological consultant at a local hospital. My bowel problem makes it very difficult to plan social events or to travel, particularly by air. So my overseas holidays are over. Even UK breaks are difficult because I need a hoist for transfers. We tried a cruise once, using a hired mobile hoist, but it was too much work for my wife, when it was intended to give her respite. The other issue is the taboo topic of sex. My wife and I have not slept together for over 20 years because of my immobility. But even if we could share a bed, my erectile dysfunction would prevent intimacy. Slowly but surely this has eroded our relationship. Has anyone else hit similar problems? If so, I would be pleased to hear how you handled them. I am sorry to raise such embarrassing issues but feel much better just from airing them. One positive aspect to mention is the help I have found from attending a day-centre for the disabled. I go two days a week, which gives my wife some respite and gets me involved in activities that keep my brain in shape. These include debates and discussion groups and art workshops. I can recommend it for lifting depression and recovering self esteem. I look forward to your comments.

Hi Butler1940.  Although by no stretch of the imagination an "expert", certainly aware that there are a variety of "mechanical" devices that men can use to gain an erection (and this rather limited knowledge is quite "dated" - was a Registered Nurse but have not practised for many years.  I also believed one of the leaflets produced by 1 of the UK's MS Societies discussed sexually intimacy? Have you researched this on the Internet?  Would you be able to discuss this situation with your MS Nurse or GP?  If you need any assistance in researching this, I should have enough experience (in research) to do this for you if needed? Best wishes, Ann

Hello, so I've recently found out after my 20th birthday I've got MS and have done for the past ten years apparently! I don't know how to take it? Or deal with it? Or what's going to come of it? Or what to expect? I'm hearing all these different things about it and what's going to happen and what I should and shouldn't do? I'm so confused? I've gone back on my anti depressants as I'm just feeling so low, I don't know how to get round it or accept it? Work have told me to quit my other job as I do far too many hours but I enjoy working it keeps my mind off of it and stops me feeling so low and depressed and now their stressing me out and worrying me as I live alone so how will I afford my rent? To live.. my full-time work will leave me with 200 a month after all bills and rent etc, but with both jobs I'm 600 better off easily! Do I quit my other job? I'm only renting a room and can't find cheaper? I can't move back to my parents as its far too overcrowded already, all this is making me even more depressed and stressed I don't even know how to deal with it anymore?

(Sorry to rant) xx

Hi, I was diagnosed January 2016, so very new to this. I haven't  been seen by a specialist consultant yet but I have put on Pregabalin 100mgs. I am having real problems in the morning, waking up every day with severe headaches - feels like someone has taken a baseball bat to the back of my head. Does anyone know if this is a symptom of MS or just a side effect of the medication. I'm not seeing the consultant until August so feeling very scared at the moment.

Hi,

Don't hesitate to share your stories on how MS affects your life.