Forum

Ups and downs

Hi everyone, So I was dx in February with rrms. Took it quite well, tried to remain positive after a relapse landed me in hospital. I have two young boys 2&4, who are great but not able to understand why mummy is tired and not able to run round with them. I am now 2 days in to another relapse, got double vision, balance is off and feel very dizzy. Trying hard to be positive and not feel sorry for myself as I know there are people far worse off than me. I’m just so **@*ed off with it all. MS is pants! Sorry for the rant I just needed to get it off my chest. I know its going to take time to get used too, just having a very bad day. Hope everyone’s having a better day. Laura xx

Also forgot to mention the boys have been taken out for the day so I can rest, happening to coincide with the day the council has decided to re-pave the road and it’s like lorry city outside. Constant beeping, banging, talking. Just want to scream. Grrrr

Hi Laura,
I am sorry to hear it is not going well for you at the moment, though well is a relative term.
I am thankful I by-passed all that relapsing nonsense and when straight the the progressive phase. It sucks but at least I know from day to day how much it is goin got such.
I hope you feel a bit brighter soon.

Paul

On no! That sucks :frowning:

Any chance of grandparents coming to help out for a while?

I hope it’s a very short one :frowning:

(((((hugs)))))

Karen x

Sorry you feel so rotten. If it’s any consolation, I get so short tempered and fed up when I have relapses too. I just need to keep reminding myself that they will pass eventually. Accept as much help as you can and let’s hope they can get you on some meds soon to reduce the frequency of them. Best of luck!

Boo x

Thanks everyone,

I am just being mrs grumpy pants today!

At least it’s easter now so the husband is around to help me out with the kids!

Thank you for listening to my rambling! I am sure tomorrow will be a better day :0)

Laura xx

hi laura

i prescribe lots of rest, a good film or a good book and lots of chocolate!

things will calm down and you’ll get used to the exciting(?!!) time we have with ms

carole x

Thanks Carole,

Yes chocolate is always good, lucky it’s easter and there is plenty around!

I’m sure i will get the hang of it all soon, no choice really have we!?

Feeling a bit more positive today, helps that the sun is shining!

Have a good Easter

Laura x

Hi Laura, I know it does take a lot of patience to put up with MS, so adding young children into the mix, then it`s pants city indeed.

The best thing you can do (outside lorries permitting) is let everyone know that when a relapse is in residence, you do need extra help. dont be a martyr to it and put on a strong facade…there`s no shame in needing and admitting it, that you could use some help.

Do the children ever sleep over a grannys or maybe an aunties? If so, then that`ll be a huge help.

I think your positive slant is admirable.

be good to yourself.

luv Pollx

Thanks Poll for the kind words. xx

Hi everyone, Hope you all had a good long weekend?!

My balance is getting better and i have not yet had to resort to the steroids, so that is all reassuring and i am feeling less stressed out!

Just wondering though, now seem to have a blurry Left eye. It’s around the edge of vision and although it does not hurt of affect my vision - it is annoying!

Never had a symptom like this before? Has anyone else suffered with this? Should i go back to GP? Shall i ask another open ended question? Lol

Just as well i never get to see same doctor twice otherwise we would be sick of each other by now!

All thoughts welcome!

Laura xx

Anything with eyes should be checked out by an ophthalmologist so, yes, please see your GP and get a referral. It might be MS, but it might not, and the might nots can sometimes need emergency treatment.

Hopefully it’s part of the relapse and won’t last too long.

Karen x

I had the same issues Laura with my eyes, blurred around the edges, but luckily vision wasnt affected. Did go to the optician though to check it out and everything was fine, so its just another addition to the many symptoms.

Hope ull soon be better, know what you mean about the kids, I’ve got 2 girls, 8 and 15, the oldest understands and the youngest is getting too, but why should she!!! We didnt ask for this illness did we. Glad you didnt have to take steroids, my last dose was Christmas and they were horrendous, felt on top of the world for the 5 days of taking them and then down, really down… told my MS nurse unless I’m bed bound, dont want them again… think the dose was too high anyway… been DX 2 yrs coming up… been told its RR… but every time another symptom comes, it freaks me out

Take care x G

Hi

Really sorry about the diagnosis and your relapse but glad your felling better and avoided steroids this time.

Ive had vision issues but they have pretty much resolved themselves I would always get it checked out though.Try and get as much help as you can which I know is easier said than done rest seems to be the best thing .

Ellie x

Hi again, thanks for your replies.

I went to GP yesterday and he said the vision was MS no doubting it, he said i should take the steroids.

I suggested it was a little extreme and i wanted to wait for steroids until my walking was affected - he said and i quote ‘what did you come to me for then’? I asked him for a referal to see the opthamalologist as i have never had eye trouble before and don’t wear glasses, his response - it was unnessasary as it’s ms related and i’d just be wasting everyones time if i asked for a specific referal everytime i had a relapse. I begrudgingly agreed but insisted this wouldn’t be the case, he scoffed and said ‘if there is nothing more i can help you with then there are a lot of paitents outside that i can help’!!!

He made me feel awful like i was a waste of his time. Once the crying stopped (thankfully didn’t do it infront of him) i got angry, so when i got in i rang my MS nurse who said i should see a different GP, or wait untill may to see neuro. Im thinking i should go to an opticians but nobody can see me for up to 3 weeks!! So think i will just have to wait untill i see the neuro, what a palava!

Do many other people have GP’s like this - that literally could not do less to help you? Luckily it’s not something that causes massive amounts of pain, had it been maybe i wouldn’t have given up so easily.

I can’t help but wonder why people with zero bedside manner go in to proffesions that require a level of empathy and sensitivity, must be the pay!

Thanks for listening!

Laura xx

Interesting point is the role of the GP when you have MS. I saw mine 3 years ago to get a referal to a private neurologist as MS runs in my family and I knew I had it, and once since to have a sick form signed. I am retired on health grounds now. I find the health service works well when you know what you want, eg steroids which i get via my MS nurse, short stay in hospital my neuro was great etc, anything else seems to be left to us. I find this forum great as a sounding board. In essence I am not sure where the GP fits into the picture and I am not sure they do either.

All the best

Peter

Oooooooooooo - I’d like to be shut in a room with that GP for 5 minutes. He’d be begging your forgiveness in the first 5 seconds if he knew what was good for him! STUPID man!!! The fact is that he cannot know and is not qualified to know what is causing your vision problem. Sure, it’s almost certainly your MS, but it might NOT be and some conditions require emergency intervention. If I were you, I would be tempted to make an appointment with a different GP and try again. Explain that you realise that it is likely to be your MS, but that you don’t want to take any chances with your vision; that all of this is new and scary and you’d like an expert to check you’re OK. If you don’t get any joy, then it’s a clear sign that a different practice is required! Think of it as a test - are they good enough to keep you as a patient? And if this GP is mean to you too, ask to see a copy of their Practice / Patient Charter or wave the relevant pages of the following under the Practice Manager’s nose while asking how well your experience meets their preferred standards: http://www.nhs.uk/choiceintheNHS/Yourchoices/GPchoice/Documents/rcgp_iyp_full_booklet_web_version.pdf There are really good GPs and GP practices out there. Hopefully yours will redeem itself, but if not, I’m sure you can find better. Kx

Sue - Thank you for your support, it means a lot, i know it may be nothing to worry about but just being denied so rudely was humiliating. I think Peter your right about the role of the GP, needless to say i wont be needing his ‘services’ again.

Karen, i think i will speak to the practice manager anyway to make them aware. I will also request not to see him again, If they seem non-plussed i will let them speak to you!! lol

My MS nurse is coming to see me today at her request, as she suggested i sounded distressed on the phone! I’m sure i will get some decent help and support.

Thanks again, it would be a lot harder without this forum to vent in!

Laura xx

Hi again Laura.

I was also incensed by the attitude of that rubbish GP you saw.

I was going to suggest you get an appointment for an eye test at an opticians. But as that couldnt happen for 3 weeks, its a damned good job you are seeing your MS nurse today.

Hope she is helpful.

Look forward to your next post letting us know how it went.

luv Pollx

Well that made for an interesting day!

MS nurse came to see me at home, explained relapse symptoms and what had happened at Dr Dolittles. I then sat stunned while she turned red & procceded to ring GP surgery - demanding to speak to surgery manager.

Got put through and explained how i was treated,how he was pushy with the steroids and how i was left feeling. Practice manager very apologetic, agreed my consultation fell below there good practice standards/NHS constitution and would start a formal investigation, and offered me an appt to see different GP this afternoon. I don’t drive and cant make the walk at the moment, so my nurse then drove me to surgery (which she is not meant to do). She came in with me to give the surgery manager some MS trust proffesional flyers, specificaly for GP’s to understandthe long-term managment of MS also how to build good working relationships, and said (in a very authorative tone) i strongly reccomend your GPs fammiliarlise themselves with this information!!

Saw different Gp who gave me a refferal to the opthamaologist, agreed steroids are not the best option right now, looked at my eyes - didn’t see anything to cause concern but thought best to err on the cautious side and build up a history, and was very pleasant. MS nurse gave me a lift home and said call her if i have any more problems!

I will be slightly hestitant to show my face at the surgery again, was not expecting such a showdown!

I am fairly certain this is not the norm and so i should consider myself lucky to have such a formidable nurse/ally!

Still a bit shell shocked by it all

Laura x