I am 68 and was diagnosed with PPMS about 4 years ago and it hasn’t really bothered me except for one leg dragging a bit and a few spasms in that leg. So in a way I have kept clear of MS support as I feel a bit of a fraud and haven’t wanted to face what others are going through and what might await me.
So why am I here, well things have got a bit worse recently in that I suffer urine retention so have now started self cathetisation which isn’t a problem, am getting constipated and am trying to get a regime of laxative taking that works and my leg spasms are getting a lot worse which is why I’m sitting here at 4 a.m. I take tizanadine for the spasms but their effectiveness seems to be decreasing.
I see my neurologist every 6 months and am due there in 2 weeks, he says that constipation and urine retention are not MS problems so whilst he is a lovely guy I am becoming a bit worried about his help.
My wife is a nurse and is a marvellous support so really I have nothing to worry about, I just wish my leg would stop spasming and I could get some sleep.
I know I’m better off than most and perhaps the best thing I could do is join my local MS group and try to help others, I supose I’m frightened of confronting the disease head on as by remaining on the outside I can try and ignore it.
In fact I don’t know why I’m writting this, perhaps I am beginning to understand what PPMS is.
Hi Randolph and welcome to our litte gang. Very glad you found us! I think we all compare ourselves to others who are much worse off and think that we are a bit of a fraud. I wonder if it’s just another form of denial. The thing is that MS is different for each and every one of us… and while you think that you don’t have many problems, you obviously are struggling with some distressing symptoms. I don’t know why neurologists are so keen to say that symptoms are NOT MS… even though we who are suffering know they ARE! I’ve recently had a neuro tell me that my swallowing problems might be acid reflux and the pains I get in my wrists and hip could be something else. I know my body. I know my MS. I KNOW these things are caused by my MS. Both constipation and urine retentions are very common MS symptoms… in fact I would say that all of use suffer from one or both of those symptoms… so don’t know why he won’t admit that. Neuro’s are a very strange species! Being frightened of confronting the disease is something we all have to deal with… it’s something that comes and goes but it does get easier with time. You need to keep in mind that nobody with PPMS (or any type of MS) will get all the symptoms… it progresses at different rates for each of us… it can go through a period of progression and then stop for a while… and sometimes it will stop progressing all together. Also, even with PPMS, symptoms can come and go… so what is a problem today might completely go away tomorow… there is simply no way of knowing. So it really is a case of not looking ahead as there is no way of knowing how things will be… which of course is the same for every human being on this earth… it’s just with a chronic condition it kind of highlights it. Try and have a ‘one day at a time’ approach. It really helps. Coming on here and going to a local support group will help you come to terms with it and to realise that even living with MS can seem ‘normal’ after a while. And the ‘living in the now’ can actually have great benefits beyond the worries about MS. It’s worth working on it. If you want to know more google ‘mindfulness’. It doesn’t have to be new-age incense burning stuff… just a simple approach to life which will help you deal with concerns about the future with MS. Anyway… excuse my waffling on… you are very welcome on here and you can come and post about anything at all… as I’m sure you’ve realised when reading posts. We are a tight, supportive and caring group who between us have got huge amounts of knowledge and experience. Take care, Pat xx
Welcome to our little ‘gang’ friendly bunch who all help one another.
I cannot for the life of me understand your neuro not thinking that constipation and urine problems are part and parcel of ms, if that is the case, why do most of us, if not all, have this problem? I am convinced it is part of ms, yet they are perceived to be the experts.
Pat has given you good advice, take one day at a time.
Like you, my worst symptom, which I’ve had for years now, is left lag spasm-ing all night, which is now pretty much cured by having Baclofen just before I go to bed (30mg). I totally depend on it now to make sure I get a decent nights sleep and muy wife doesn’t have to sleep in the spare room. It’s helped my marriage, mood and energy levels.
So ask your GP/Neuro for a baclofen prescription if tizanadine is not doing the job.
And keep active. I’ve had MS for about 7 years but only got officially diagnosed a year ago (…don’t ask!), but my Neuro and GP both agree that having had a regular exercise regime all this time has helped to keep my symptoms at bay and helps all-round well being.
Interesting PS to my post… I just had a speech therapist here… referred by my neuro to help my swallowing problem… which neuro thinks is from acid reflux. The therapist said NOT acid reflux… esp as now I take a pill for it and don’t get acid… he said it IS the MS causing the problem… He also said why don’t specialists listen to patients living with long-term conditions… the patient usually can tell if it’s cause by their condition or not!!! Anyway I might have to go and have a sort of x-ray video of my swallowing… thankfully NOT with a camera inside me. Pat xx
I got my dx of PPMS last year but have also probably had it for years. I think that Pat, Pam and CP have given you fantastic advice and just wanted to say that I agree with what’s been said. I also have bowel and bladder issues as you described and according to my Neuro they are ms related. In fact so many sufferers I’ve heard from both on this forum and another group I belong to have mentioned them that I’m in no doubt of this fact.
I also feel guilty and lucky at times as my symptoms and mobility are better or worse than that of others. I sometimes feel I’m coping really well and at other times I go into melt down. This also is really common, so I don’t think that what you’re feeling should make you feel alone or guilty.
As the others have said, this forum is a good place to get and give support and advice and I hope you’ll visit often. We all cope with everything differently and appreciate help and comments from others, reassuring us that we’re not alone. You appear to be managing well, it’s very difficult as you say though when your symptoms get worse. Are you sure you aren’t starting with an infection, a urine infection for example, I know I had a few when I started self catheterising. These can bring symptoms on really badly and are sometimes reversed when the infection goes. As Pat said though, sometimes we continue steadily and then symptoms ease or worsen and then ease or remain worse, every person is different.
Sorry about the essay, I hope things improve for you. Take care.
Hi Randolph, Everyone has given you such good advice that I can’t think of a single thing to add…other than a big welcome to our little group. Hope things soon improve for you, take care of yourself, Nina
As an after thought…I think neuros are a law unto themselves. Mine is wonderful but he did once say to me that he didn’t think depression was an MS problem!!! Nina
Hello Randolph, I can reiterate what has already been said about the neurologists. I think mine only reacts when pushed! I think it’s vary much a case of asking specific questions and qustioning unspecific answers if you know what I mean. Before an appointment, I will think about what I want to know and let him or her know that I am actually in touch with others similarly affected. While every case is individual, there are common strands. It’s also useful to keep up to date with current medication, whether you want it or not! Welcome to our group. Best wishes, Steve.
Many thanks to Pat, Pam, Clucker, Cath, Nina and Steve for your warn welcome and helpful words.I am due to see my neuro on 25th April for my 6th monthly and my wife is accompanying me as I tend to forget to ask the right questions! When I say I am seeing my neuro what I should say is I hope to see him and not his registrar, anyway got a plan for that as I shall phone his secretary a few days before and confirm that he will be there, if not I’ll make a new appointment. I don’t know what others experiences of registrars are but I have found that they change and you never see the same one twice and with MS you need to see someone who knows of your condition, having said that so far I have seen 2 regies, one was brilliant and one was aweful, bit like the curate’s egg I s’pose.
Anyway once again my thanks and I’ll let you know how I get on on the 25th and in the mean time join in the conversations where I think I can be of use.
Oh yes I managed a good night’ssleep last night as I managed to manage the spasms - bliss!
Randolph I know my Neuro likes it when I take a list of questions, that way he knows that when I leave I’m happy. My Neuro is lovely, he’s the expert for NW England and spends as long as needed with each of us. It means that you have a long wait with each appointment but it’s worth it. I hope you see the consultant, there’s nothing worse than being pacified by someone who you feel doesn’t care. Do you have an MS nurse? They’re a huge help. If you don’t, ask to be allocated or let us know as you can contact them yourself, there is a national phone number to call.
Good luck with your appointment and remember we’re always around for each other.
Cath I live in the NW and go to Blackpool and while my neuro is very helpful I do wonder if MS is his speciality, who and where is your neuro. With regard to the MS nurse it took me 3 years to make contact and I now have the details of the Lancaster nurse but haven’t contacted her as I feel she is busy enough and I manage with the help of my wife who is also a nurse. R
Hi again Randolph, it’s a bit mix and match with neuro’s… some are very good, most are ok, some are lousy… and certainly not all are MS specialists. Last year I had a registrar who was brilliant… really very understanding and actually listened… and before I was diagnosed I saw a registrar who took the time to explain why a lumbar puncture would be worthwhile. I find it much better if you go to appointment armed with list of concerns or questions and sort of take charge of the visit. Someone advised me to do that when I first started going and it works well… you get what YOU want out of the appointment. Like if you want to see the bowel nurse or bladder nurse, ask outright for the referral. Don’t wait for them to offer… chances are they won’t. Great that your wife is a nurse! MS nurses can be very helpful and understanding… in my experience much more than neuro’s. Hope you’re having a good weekend, Pat xx
Hi and welcome Randolph, I was also diagnosed last year and haven’t braved the MS society yet either. My friends here are first port of call for most stuff and I’m so relieved to have an MS nurse! She’s amazing
I think that there’s so much that’s difficult to accept, MS seems to be so random! I kind of thought in my 40’s, I could deal with most stuff and I’ve always been very independent, now I find that I can’t even leave the house without help.
As for my bladder, that’s taught me a whole new level of patience - not MS indeeed?!
Hi Randolph and welcome I suffer terribly with constipation and have had a spupra pubic catheter fitted for 16 moths I am currently in bed with a urine ifection the first one in a year. I used to get one every six weeks with a uretheral catherter and the specialist uroligist said it wouldnt make any difference. I endured three years of almost monthly reall bad infections that reduced me to a week in bed each time, he was a prat and ended up with a stand up row with my wife because he was a prat. Constipation could be made worse by the antispasm medication the gut is a big long muscle.
[quote=randolph]…I am due to see my neuro on 25th April for my 6th monthly and my wife is accompanying me as I tend to forget to ask the right questions! When I say I am seeing my neuro what I should say is I hope to see him and not his registrar, anyway got a plan for that as I shall phone his secretary a few days before and confirm that he will be there… [/quote
Hi Randolph
You and me both as far relying on the wife to organise a list of questions- I’m hopeless!
Funny story about neuro’s and their secretaries:
I was in hospital for 8 weeks either side of Christmas. I saw my neuro lot before Christmas, then moved to a physio rehab ward and didn’t see him again. I kept asking the nurses to see if they could get hold of him, with no luck. In desperation I rang his secretary- she was out so I left an answer phone message, saying which ward I was on and could I possibly see him?
Some days later he turned up out of the blue, and said “We thought you’d gone home ages ago!” It was following that bombshell that he also broke the news to me that the conclusion was that I have MS.
I was diagnosed in Preston but used to see a Neuro in Lancaster. I live near Grange Over Sands in the South Lakes and found it difficult driving that far. I used to have to get someone to take me but when ms was dx I asked if I could see someone close to home so they referred me to Dr Footitt who specialises in ms and has clinics in Ulverston and Barrow in Furness which I can take myself to.
Are you actually living in Blackpool or could you travel to Preston? I’m only asking as the Neuro I saw there was great with me too, he promised to get me the correct dx and admitted me to Preston for 3 days and ran every test I could imagine and I felt comfortable that when he gave my dx he was certain it couldn’t possibly be anything else. He came across as very competent and confident which is what you need. He was also very patient. His name was Dr Majeed.
He definitely made sure before giving me my dx and didn’t play silly beggars playing with my analgesia as he could see I needed it.
I hope you get sorted out, I think it’s really important to have medical professionals who you can bond with and feel comfortable discussing your symptoms with and getting proper answers from. Especially as this is an illness you’ll have for the rest of your life.
I can’t remember whether or not an Occupational Therapist was mentioned as they’re also a fantastic help with making life at home much easier and safer. You can self refer to them through your local Adult Services team. I wish you well and don’t be afraid to ask questions, it’s rare to find a specialist who sits patiently and just offers all the advice and answers you need, and someone on this forum can usually help too, experience counts a lot with this dx