First Timer

Everyday living
1

Hi, first visit to a forum so bear with me.

I am not generally grumpy, miserable or phased by my MS, I was pleased when told as it was not fatal, I am still able to laugh at myself, if offered a drink I say “no thank you, I can’t walk when I’m sobre”, likewise whenever anyone asks, “how are you?”, I say, “above ground and taking in oxygen, better than the alternative”, with a smile.

I was diagnosed with Relapse and Remitting MS at 37 in 2000, now secondary progressive since around 2003? Recently though it doesn’t seem to have either progressed or deteriorated, more like same old, same old coping one day - pick me up by crane the next… someone has pushed me off a cliff!

From my history any relapses were triggered by something physical, infection etc and steroids reset me, but nothing is working and I don’t get it. The worst thing is, I see my GP, he says MS see the MS nurse, MS nurse says medical see your GP? This has gone on since end of December, my mobility is getting worse, the discomfort of my legs is phenominal, freezing, burning, lots of electric shocks… get the elephant off my feet will you? my memory, concentration and any thought process is fading quicker than I am, and I feel like my requests for assistance cannot be heard as I am obviously SILENTLY SCREAMING!

I am currently awaiting a lumber nerve block for the pain, but right now I am really after the cause, is this normal for S&P and any advice/ suggestiongs on easing the discomfort would be gratefully accepted, and I promise not to scream

Sorry i wrote this in the wrong place first time here, a mistake

2

Hiya,

Don’t worry about where you write posts, if we can’t help, somebody will know where to direct you. WTF is going on with your GP/MS Nurse? It does sound like MS, but if it’s not, then this needs to be investigated by your GP. In the past I have experienced a few GPs who will not see past the MS, and put everything down to that. It is possible to have other things wrong with you - it’s a novelty, but it does happen - can you see a different GP maybe?

I can’t help with pain relief, but I’m sure that you will get other replies from people who can relate to your problems.

Good luck,

Luisa x

3

Hello and welcome,

I know only to well the expression ‘will somebody please get this elephant off my foot’ as that’s exactly how it feels. Have you tried ringing your neuro directly or even her sec’. I’m surprised your MS nurse and gp won’t do anything for you that’s why I suggest you miss out the middle ‘man’ and go straight to the top.

Don’t silently scream do it on here to us we are listening.

Good luck

Janet

x

4

Hi Jacqui,

Welcome to the forum - lots of new people recently - this is the right place to post questions.

Can’t really give you any good advice other than change your doctor!!

Hope you get things sorted out and keep well,

Jen xx

5

That sounds horrible for you, not to mention horribly frustrating. Presumably the person who ordered the lumbar nerve block had some sort of notion of what the problem is that this is meant to fix (OK, OK, I can hear your eyes rolling from here…) The sorts of pains you describe certiainly sound like the sort of pain MS can cause. How have you got on with the range of drugs that they prescribe to help manage MS pain (or have you even tried them?) There’s no doubt about it, if a person has a problem in more than one medical area (for instance, MS plus some kind of orthopaedic problem) getting someone to own the buck rather than try to pass it can be a heck of a business. All I can suggest is, keep on at them to get your problems taken seriously and got to the bottom of. Being patient and long-sufferering can get you nowhere - good luck with a sustained campaign of polite, steely insistence!

Alison

x

6

Hi Jacqui, and welcome

I’m not SPMS so can’t tell you if what you’re experiencing is normal for that (mind you, what is normal in any kind of MS??), but I would love to be able to bash your GP and MS nurse’s heads together - what a pair of jobsworth buck passers! NOT helpful and NOT doing their jobs!

I agree with all of the other replies - try the neuro’s secretary / neuro, change GP if necessary and keep nagging! It is a sad state of affairs these days that those who shout loudest tend to get helped first and most. It might be worthwhile speaking to the Practice Manager at your GP surgery - they can get GPs to do things that patients often can’t!

If you don’t have any joy soon, then you could speak to your local PALS too? And there’s always your MP - some of them can be really helpful and actually get things moving.

Good luck!

Karen x

7

Thank you so much everyone for your comments, they are a lot more welcoming than the one I got when posting it in the wrong place.

With regards to other gp’s I see a different one quite often as the surgery is booked up, but none like to step on the toes of the one you’re registered with, and i’ve only seen him a couple of times, gp’s don’t have a clue which is why i’m bouncing around. I have spoken to my consultant on the phone having missed my last app, because I couldn’t get there, he said to wait for the pain management app, all well and good as I was supposed to be referred there in 2003, i ended up at rehabilitation some how instead, and there i have remained unril now, after trying so many meds that do not work, he had to send me on.

With meds i have tried, Gabapentin, Pregabalin, amitriptyline, nabilone, Baclofen and more, presently on tramadol but that doesn’t do anything either. My problem is that i pick up side effects quicker and easier than a child will sweets, especially the generic ones.

Trust me i have tried many things, the practice manager is worse than my gp, I asked for a change of DR when i kept being sent to hospital for blood clots, and embolisms, he was newly qualified and had little coloured tags in his BNF bless him, the next one i got was in a room that was not accessible by wheelchair… good eh? no wonder I am silently screaming.

At present I confess I have been naughty, i rang for a telephone appointment and asked for a district nurse to do a full blood count, requested by my MS Nurse to check for an underlying infection or inflammation, (I lied) even so she asked when I last tested a sample… I was a nurse, how stupid do they take me for! Anyway, I have nothing to lose by trying to find a possible trigger by myself, it seems the only option.

I am obviously concerned that as you never completely recover after a relapse, how will i be after this lengthy and terrible one, or maybe it isn’t a relapse, it is just the progression, but I think I should be able to find out.

My husband says that an neurologist consultant is the best job in the world, you get paid incredible wages to be be a consultant of someting that a) nobody knows the cause of, guesses at what might treat them, know nobody else can contradict them, and have a heard of nurses doing exactly the same thing as them but on a smaller and lesser paid basis!

Again thank you so much for your kind responses, I shall sit and rock and hummmmm instead of silently screaming, you never know somebody might notice me

Jacqui xx