Since being diagnosed 2 and a half years ago with ms i have found it hard to talk to my ms nurses, my nuerologist and doctors about my condition. They always seem to be not that bothered when i have issues due to my ms or even when i have had relaspes. I know that there is not much that they can do but i always feel like i am treated like im bothering them and any conversation that we have always leaves me feeling upset cause eveything is ignored. Nowadays i just let happen happen and whenever i have a appointment i just bring it up then or if its really bad then i will try at my doctors. Sometimes they help sometimes their not bothered too and tell me to talk to the ms people instead. I just get left in limbo all the time. Its a never ending circle of just being brushed off.
I see my nuero once a year and when we go through things of symtoms and stuff with him he’ll say to me thats nothing to do with ms. But when at the times when i have contacted the ms nurses about some of these problems they say it is down to ms. I dont get it.
Yes I agree with you, I automatically thought once diagnosed I would have some kind of plan to help me, but alas it was the time before ms nurses, time before gp’s knew anything about ms and at a time where even my neuro at the time thought I would go away never to be seen for years. However in reality it was quite different. Id gone firstly because I had lost my sight in my left eye, had dreadful migrane, weakness on my right side, hands and feet numb and fatigue daily. I was given amytriptiline and eventually lots of other meds - yet when I suggested other ‘outside the box’ problems were being experienced I too felt like I was treated as if I had mental problems. It was at that stage I asked my gp to read up on ms, he did and another gp as well, rarely bothered with neuro or ms nurses because I felt each time (sometimes months later) I would get an appointment yet the symptoms which were bothering me had either subdued or stopped altogether - making me feel even more of a fake than I already felt. Then I joined this website where others felt similar and over the years more has been written about the hidden symptoms of ms. Alas now more altogether has been written about ms. I would say though when it comes to describing how fatigued we feel, how our mobility varies daily, how we cannot function if the temperature isnt moderate and feel nerve pain - all except mobility are hidden symptoms yet we are left feeling so alone. That is where your pals on here can help. The care, love and support of others, plus brilliant advice as to where to go for help or whatever medication might help is often suggested, thus we are our own ‘expert patient’.
You are not alone in feeling as you do, lots of other msers either feel like it now or have done in the past and gone their own way. Some have stayed on here for support whereas others have sought help from their local ms group, friends who suffer similar or tried using supplements and gone their own way. I know of a few who dont have any contact with the professionals although I wouldnt advise that - theyre much older than I and have had years of experience of what to take and what not to take.
I hope you feel at home with us. Please continue to talk and ask for help and advice as theyre a lovely bunch of msers on here.
Jut wanted you to know Ive felt just like you - Im now getting more recognitiion because I demand more now but only after listening to others.
Definitely agree with you regarding Neurologists and MS nurses.
My GP is nice though and tries to understand, but then says Mary you keep coming to me with incurable things -he’s witty honest and reliable - I get the same every time I go. He says it with a smile and a look on his face that conveys I’d like to help if only I could - if I had the anwsers - but I don’t. He does help to ease some symptoms and I like him for that.
The other two (Neurologists and MS nurses) are a waste of space.
I do think that my Neuro and nurses were trying not too make a ‘big deal’ about things. I get the impression they tried not to frighten me. At the time I was annoyed like you, as it seemed that they didn’t want to listen to what I was telling them, every symptom I had was ‘not MS’. I understand now what is MS and what might not be. I don’t believe medics when they say that a frozen shoulder is ‘not MS’, and an over active saliva gland is ‘not MS’ because it may not be but I know it probably is. I found that people took more interest in me once I started Betaferon and I have had more honesty from medics who have had to admit that I am now considered S/P. I do think that doctors do not like a condition that they cannot do anything about and as there is no cure they can only treat the symptoms. I do understand how you feel but trust my own feelings these days. I do have good MS nurses and a good GP but I have to realise that they don’t know everything about MS any more than I do.
I agree about the MS nurses. I find mine not one bit helpful, I dont know why I even go. Today I was left waiting nearly 2 hours to see them, then once I saw them it felt like a complete waste of time as i was in there for 10-15 mins. I love my Neurologist and my GP, I have a new Consultant who I havent met yet. I came away from today confused, angry and annoyed. Surely there is someone who can help when you need them.
I have been in the exact same position. It’s awful,very isolating and made me feel quite resentful. I used to think why bother ? Why are you asking me questions when we both know you don’t give a spit. I swear it was a box ticking excerise, yes she’s still alive,no she doesn’t need to go on the wheelchair waiting list.
It’s carp.In the end, lucky me I transfered to a new hospital. I’d moved to a different county but stayed with the spit hospital because I was on a DMD and the new hospital wasn’t funding them at the time. I also thought,better the devil you know.
I got so fed up with it all that I saw my GP and asked him to write to them to say I wanted to be discharged. He said,you’ll get much better treated at our hospital you know, so he got be transferred there.
It was the best thing I’ve done,although they are not perfect,they do care.My MS nurse rings me back, I was stunned the first time that happend!
Unfortunately, the standard of care for us varies depending on the hospital. Yours sounds terrible.
What’s you GP like? You a supportive one.Maybe you could transfere to another hospital. Speak to your GP about the situation,then conntact you local MS Society branch,tell them what’s going on and see if they know of a better hospital you culd transfer to.If you pm me I’ll give you the names of the hospitals I’ve been to which might help if your in or near the Peak District. I don’t name the carp hospital on here in case it upsets others who are using it.
You don’t have to put up with it.Take care and I hope things improve for you,xxjo
Thanks everyone for the feedback. Im glad im not the only one. I guess it makes you think, i mean i will never trust them because of the level of care that has been given to me so far. I found out i had ms through a letter, i dont know other peoples experience of finding out but i thought that was very unprofessional. I was so mad that day i put the letter through the shredder.
But hey at least i know its bad treatment all around (well nearly for some).
Hi, I was also diagnosed about 2.5 yrs ago. My neurologist was soooo unhelpful. He wouldn’t answer any of my questions he just said ‘due to the nature of ms we dont know’ after one distressing relapse he said I could have steroids quote “if I want” He also said there are no treatments for ms only trials drugs which give you viruses in your brain - I kid you not. Anyway I asked to be referred and my new neurologist is great, actually gives me a straight answer and has put me on copax. I also have access to a nurse who is very good. Anyway what I’m trying to say is not all neurologists etc are the same and if you are really unhappy if possible I would ask to be referred to someone else. I have to travel further but it is so worth it for better care x
I was diagnosed in 2007 and am one of those lucky people who get to see my Neuro and MS Nurse every 6 months. My MS Nurse is contactable and has even done home visits when I’m too fatigued to make it to the hospital, which I’m very grateful for.
However, one thing I’ve noticed is that once you’re diagnosed with an illness, whatever it is, you end up feeling like you’re on a conveyerbelt with the medical bods assuming, if not expecting, your illness to follow a pre-defined path. You’re expected to be a good patient and do as you’re told as they’re the “expert”. Well, I have been a thorn in their sides since diagnosis. I have MS 24 hours a day, 7 days a week, every day of the year, not just the 30 mins I’m in their consultation room for, and I’m very proactive at doing what I can to help myself, from diet and exercise to more holistic solutions. I’ve done, and continue to do, a lot of reading and I feel now that I’ve eventually settled on a routine that’s benefiting me. Of course, my MS Nurse, Neuro and GP tend to humour me and look at me as if I’m wasting my time and that I should just let the illness take its course, but I don’t like being ill, I don’t want to be ill and I’m not going to be ill. End of.
Since having my 2nd child in 2003 I’ve suffered with unexplained bouts of bad cystitis and to cut a long story very short, diagnosed myself with Interstitial Cystitis after researching on the internet. My MS Nurse, Neuro and GP wouldn’t believe this and tried to convince me that my problems were down to retaining urine and that I needed to go on long term antibiotics and use a catheter. Wrong. Eventually, I convinced my MS Nurse after she scanned my bladder with her ultra-sound thingy and got my Neuro to refer me to a Urologist. He was next to useless and could only recommend invasive tests and trying various drugs. So, it was back to the internet where I came across loads more info on diets, things to help IC, low oxalate diets and various other things and now I feel 100% better. I’m eating lots, exercising again and feel very positive. I would recommend the books by Catherine M Simone to anyone who feels they need a kick up the backside, regardless of whether they have IC or not. Sorting out my IC seems to be helping my MS as well.
I’ve waffled on a lot, but I guess what I’m trying to say is don’t be afraid to take control, even though others might not like or expect it. That’s their problem. You have enough to think about.
diagnosed in 1999,not seen MS nurse,and neuro last time i seen him ,in and out in 2 mins,go to hhospital yearly to see doc,but never him alway his assistant,last year was 5 min,I dont know if they feel inadiquate,about our illness and just givee you some reassuring words
Hi Mary, ok, yeh, we go to the doc with our incurable conditions, but surely there are drugs to help with the symptoms. We all know about nerve pain meds and baclofen…but there still could be other drugs we are not aware of. So who are we to ask if not the docs? Crazy!
I agree wholeheartedly. I have been diagnosed for 11 years, and muddled along quite nicely with help of an excellent MS nurse, but unfortunately I had my third baby and she went on maternity leave at the same time. Since then things have been really dreadful. The nurse who fills in for her has not got the get up and go to argue against the doctor, or support the patient which I think is a major part of their role. The consultant is no better, getting my driving license revoked because he accidently ticked the wrong box on the DVLA form! I then transferred hospitals as I had moved to another county. my MS has been misbehaving since september, mostly debilitating fatigue, but numbness of hands to the extent I struggle to hold a pen or wipe my baby’s bum! I’ve also had a number of falls including one that broke my shoulder.
I’ve been signed off from work since I was due back in october. My occupational health doctor doesn’t think I will ever be fit to work again, but my neurolgist only sees whats on the outside. I’m still walking, my bladder is fine and I’m a mum, you never give up when you are a mum! But I can’t do everything I need to do in a normal day, let alone go to work. I applied for a new job and the occupational health doctor rang me today to say she would not be recommending me to be fit to work. But she is not sure that I will qualify for a full ill health pension. Her words were, “you are a coper, you will cope and you are useless at asking for help, I wish I could prescribe you a couple of weeks away, so that you could adequately rest and recuperate” But your neuro is not saying that you are particularly debilitated by the MS.
I’ve had a DEXA scan today because I’ve had so many steroids. I’m having another MRI on saturday. Hopefully that will show marked progression since the last one in 2001 so that someone will believe that I’m really struggling. The neuro did say that perhaps I should stop work for a bit longer, after all I do have 3 children to look after. I often regret having this one, she was the straw the broke the camels back, my body just can’t handle it anymore. Too old, but I think I’m too young to retire (at 37) and maybe some input somewhere along the line might help, even if its just something practical. I’ve done all the DMT’s and not got along with any of them. Wish there was somewhere else I could go. But even the health visitor is useless, I had to make a complaint to get to see one!
I must admit that whenever I am visiting the neurologist, I feel as if I am a (disposable) part of a very old fashioned and creaky traction engine. I TRY to think that he wants the best for me, but he only walks me round (at speed) a circuit of the corridors, while he smiles at me all the time with an unflinching face. I am sure that really his job must be boring; as he must have to act like the Grand Old Duke of York all day, but I can’t help wanting him to speak to me, and perhaps tell me what he might do if he was in my position. I can’t honestly remember what his voice sounds like.