MS Nurse

Everyday living
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Hello everybody. I’m a lurker and have only posted a couple of times before. I’m a bit down at the moment having recently been to see my MS nurse. It is not her fault, but every time I see her, I get really really low afterwards.

I’ve got Primary Progressive MS. Was diagnosed about four years ago. I work full time as a PA for a financial company.

The two things that annoy me are that she keeps on advising me to leave work even after I’ve told her several times that I can’t afford to live if I don’t work.

She is also always trying to get me to do volunteering. I would love to, but I just don’t have the time. I give regularly to a dog charity as well as an elephant sanctuary. I also go on sponsored walks with my husband and dog. However, my walking is now suffering. Strangely, I can cycle for miles… but can only walk for 5 minutes before I need to sit down as my leg goes weak. So this year, I’m looking into joining charity cycle events.

Sorry, i’m going off track… Literally! haha.

My question is this…, is there really any point in keeping an MS nurse? What are your experiences? I feel personally, that she hasn’t told me anything that I can’t get from this forum, or the internet as a whole. Also, I feel that i’m wasting NHS funds by continuing to see her. Finally, I get depressed every time I see her. I know that that is partly down to me because I get reminded about how ill I am/going to be.

Thank you for reading.

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Why does the MS Nurse keep telling you to stop work? If you are going to do something, why not get paid, as opposed to volunteering? If you are only feeling depressed each time you see the MS Nurse I don’t see the point in continuing to see her. No one needs a nurse that makes them feel worse. When I had a MS Nurse I would take the opportunity to let my wife talk to her, as I’m very aware that my illness affects her as much as it does me. The other benefit was that the nurse would refer me to other services such as neurophysiotherapy and getting me a wheelchair. If you don’t need referrals or advice on medication then you are wasting your time. Best wishes, Anthony

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Hello

I like my MS nurse, she’s sensible, has a good sense of humour and doesn’t mind when I swear (appropriately)! She tends to give some useful guidance, but essentially leaves me alone to sort out what I need and don’t.

Yours is giving you what sound like utterly contradictory advice - stop work but do some volunteering?? That sounds utterly nonsensical! And in addition you are left feeling depressed after seeing her. I’d just stop seeing her in your shoes.

As well as being useless, it adds to your load of ‘stuff to do’. And I imagine you have enough of that already.

Keeping as active as you sound is the best way of keeping your body and mind healthy for as long as you possibly can. Don’t expect that you are definitely going to end up completely disabled. It’s obviously possible, but not certain.

If you feel like being less of a lurker and get more involved with the forum, share your experiences as well as learning from others, then you’ll probably get more benefits than you are currently getting from the nurse.

Sue

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Thank you for your excellent responses. I guess I will just not bother to see her and in future, if I need a wheelchair, I can always contact my GP for a referral, hopefully to a different one. I guess there are good and bad MS nurses.

And Ssssue, I will post more. I’m enjoying it and you guys are very friendly and helpful.

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Hi Ladygodiva,

Sorry about your diagnosis, but glad you’ve found us.

Annoying you’re having issues with your MS nurse, very upsetting for you.

I see my MS nurse every year. Mine is very helpful and supportive. As Anthony said, useful for referrals. I got a foot up, FES trial, that didn’t work, wheelchair, neurophysio. When filling in my PIP she was the one that spoke to the powers that be, doubt the neurologist would.

Is there any chance you could change nurses? Are there 2 in your area?

Keep stalking this site for tips but it’s nice to hear comments from people too.

Seeing my neuro on Monday - questions at the ready…

Jen

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Morning hun hope your not too chilly (he he). anyway ditch her. Jeez who needs that kind of support. i finally saw mine a he, then i saw a lady six months later. as much use as a chocolate teapot. she just said she would push for me to see neuro and see if i could go on ocrevus trails (at time they were refused by NICE), AND to rest and if i needed anything to ring her. that was it basically.

when i did need her i rang and rang and finally she just said see your GP.

I shant bother again. I dont care if i ever see my neuro again they cant do anything for me anyway. I get really good support by my doctors who look after me very well. If i want something they sort it for me.

the trouble is there is one in our CITY well 2 but you really only see one. they are so overworked.

I have PPMS, and with this group and another one and my doctors i just get on with it.

You keep working good for you i admire you 100%.

I have heard other people say they can cycle but not walk. there must be an explanation maybe it is the different muscles we use and perhaps its easier for the brain to cope with.

i think your doing a great job, working wow keep going for as long as you can hun.

xxxxxxxxxxxx

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I don’t see the one i had anymore.I thought she was no good at all.It was a waste of time going as i felt she knew very little about MS.

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Hi ladygodiva. I have diagnosis of PPMS and like you, I still have to work for financial reasons. I can’t see the logic in the nurse’s advice for you to give up your paid job and then work for free. If she suspects you need to take a rest from working then why suggest you take on extra work that you won’t get paid for?

Although I also am not in a wheelchair, even a very small amount of physical exertion exhausts me and causes pain that can last up to several hours afterwards (the amount of exertion to cause this would be things like the short walk to the bus-stop for my commute to work, then walking from the bus-stop at the other end to get to my work building).

I have had a horrible time fighting for reasonable adjustments at work. I was granted a very limited amount of time to work from home, but in the course of fighting for this I became viewed as a liability by the bosses and they have really taken against me. They did things that definitely broke the law (Equality Act) but I’ve not had any support from the institution. It’s been devastating.

I am going to see an MS nurse for the first time in a month or so. I don’t know if it will help, but since my GP’s advice and support is limited to offering me Gabapentin (which makes me feel terrible) and then telling me to wait and see what my neuro says at my next annual appointment - then my neuro’s once-yearly advice consists of telling me to see my GP and ask for Gapapentin to relieve my symptoms (it doesn’t!) - I feel pretty much on my own as it is. When I’ve asked my neuro for more information, he says ominous things like “Primary progressive MS is never a good diagnosis” and he looks at me like I need to be told that because I’m not sufficiently grateful for my relatively good health in the meantime. Maybe that’s true, because I know things could be so much worse, and that things are worse for a lot of people who have MS. I also know MS is unpredictable and there is no certainty that I will end up with serious mobility issues and no certainty that I won’t.

Truth is, I’m having a hard time coping with pain and sensory symptoms (and worry about the future which I try to put out of my mind mostly), but I live in a part of the country where the NHS is pretty stretched, so I’m not a high priority. I don’t know if that’s the same for you, but I think when resources are tight we get conditioned to be so grateful for any kind of help at all, that sometimes we end up accepting things that aren’t even helping.

I decided Gabapentin wasn’t helping me enough to make up for the side effects, so I stopped it. NB. I had not been on the medication long enough for this to be dangerous. I would not advise anyone to come off medication suddenly without medical advice, because that can be dangerous.

If the MS nurse isn’t helping you, and worse than that, seeing the MS nurse is making you feel depressed, then I think it’s only sensible for you to question whether you want to continue to put yourself through it. Gabapentin made me feel depressed. I have enough going on without depression in the mix, and it sounds like that’s true for you too!

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what an excellent post its like you wrote for me too hun having PPMS.

My biggest isssue is pain and sensory issues, and the wax and waning of my feelings. I had a good day yesterday it started sad it was my anniversary of my wedding my husband would always buy me a lovely card with words, and i missed him terribly and thought i would never get through the day, but my daughter said she was coming and i almost cried as I knew it would cheer me up, she loved her dad (step dad). I shook myself and found the energy to do some little jobs i needed to do, and made us a nice roast lunch.

I felt so much better. My spirits lifted and i almost felt normal.

I wake up this morning in HELL again. I feel awful everything is buzzing, my eye sight is rubbish, my brain is acting badly like the usual adrenalin rush gone mad. I find this side of MS the hardest to cope with. Its total ability to morph from a good day to a really horrible one. Hopefully i will feel better but i know now i have to fight being too anxious.

this is the time i feel like giving up.

my left leg the sensory stuff is horrific, my head is buzzing so loud i can just about hear the music.

i have tried gapapentin too it made me feel awful. my nerve pain clinic doctor said a lot of these drugs are pysch drugs and a lot of people with MS cant tolerate them, they are only designed to keep you quiet and well spaced out. He doesnt like them himself as believes there are other better things which sadly NICE have not allowed us to have.

I too would love to work but i can just only walk a few metres without being in terrible pain and exhausted yes i could use my wheelchair but i used to teach I.T. and it is very demanding.

I think anyone who is working with PPMS are my heroes to be honest.

big hugs. xxxxxxxxxxx

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Update.

I got a lot worse. Broke my knee. Can hardly walk now. Fall…even with walking stick. Looking at a mobility scooter. Got PIP. Stopped work. Still cycling. Right foot clipped in.

Starting a course of Cladribin soon. But i have no MS,Nurse. There is only one in my area and she is the nastiest health professional ive encountered in my life. Sometimes… i used to think she wished me dead.

There are a few others but they cant see me as im just outside their catchment area.

Feel up and down but at least ive got my cycling.

My family are very happy that im starting cladribine soon… however… i feel numb about it. I feel as though im closing the stable door after horse has bolted…

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You are perfectly within your rights to ask to be reassigned with a different nurse as your primary point of contact within the MS Nursing Team in your trust. Don’t be fobbed off - and there is always the PALS team (complaints dept which reports to the Chief Exec of the Trust).

Why are you on cladribine? Have they not offered you ocrelizumab?

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I have been having six monthly telephone appts with my ms nurse for the last couple years. They used to be in person but the pandemic stopped all that

I find it useful because the last time I had one with her (a month or so ago) she correctly diagnosed over the phone what the doctor didn’t (UTI) and I managed to get the correct treatment (eventually)

Also, when I asked my GP for a shingles vaccine (I’ve had it before and still some of the nerves are damaged on back) and they said they were hesitant (cos I’m about 30+ years too young) I got on to my ms nurse and she told the surgery to give it to me - which they did

I like having this check in with them, she always reports back to my consultant neuro what I say and I feel like I’m in good hands

I want to keep having these appts, because although Lemtrada has worked remarkably well for me….no one can give me a prognosis….so I feel, if things went wrong and I started relapsing I know they’re only one call away and this makes me feel somewhat safe

It’s sounds like you don’t get the same satisfaction (if that’s the right word) from your ms appts….maybe you could ask for a different nurse….I’m sorry that you feel this way

Best wishes xxx