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MS Nurse Appt Questions

Okay folks wanna get my mind straight before i go i got an MS Nurse appt this Thursday coming , any suggestions would be great as im still new to it and new to accepting it , my neuro says the changes to my my scars are very subtle and thereforee because of little activity he has ruled out dmds but since seeing them months ago ive had the ms hug start , spasms/cramps in thighs and calves and severe neck pain right down through the spine lasting 2 weeks ive been slightly unbalanced and have had pins needly feeling sown my left leg and left arm and my left eye has been aching and i also made a mistake as my neuro asked me if i could walk to a train station down from the hospital i said yes with stops and my stick , i have since been back there and its approx 2 miles to it , i thought it was only a few hundred yards as i stop 3 times when walking 3-400 yards and thus walk normally costs me 2 days bed rest to recover , so what should i be asking my nurse for or about and what should i expect from her ? as to date it has taken her 3 months to reply to 1 email and a teelephone call to the neuro’s secretary to get a letter about my mri results this took 3-4 months to happen too, i guess i know after Thursday im gonna be alone with it all again and months before i see anyone and i dont wanna be left in limbo but and heres the but im not 1 for saying i need help or asking for anything so this has and continues to be a long learning curve for me many thanks in advance you folks here are the dogs wossits and an asset and help to us newbees

respect sheep

Hi sheep, can’t really answer any of your questions, but I am gob smacked at how all of us have different experiences with our treatment of the same thing. I think where I live (Bournemouth, Dorset) have been very lucky with all the support and help from neuro, MS nurse, GP etc. was put straight on DMD after dx last August, so now one year on and am still learning. Good luck for next week hope you get the answers you want.

Hello Sheep

A good MS nurse will know all the right questions and how to engage with you, so don’t get too anxious

Why don’t you print off what you have written here…seems an excellent opener to me, on how vulnerable you are feeling.

Ps; sorry about quoting, but having trouble getting some of my replies accepted…very frustrating rewriting everything.

Good luck

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hi sheep

don’t act too brave because the ms nurse and consultant only know what you are going through if you explain it fully.

tell the ms nurse that you over estimating how far you can walk when you saw the consultant.

good luck

carole x

Hi sheep,

The first thing you need to do is get your story sorted out.
From what you posted, what you really want is to be put on a DMD, but it also sounds like you need a course of steroids right now.
That means that you need to tell the tale so that the nurse comes to that conclusion herself.

A neuro advised me some years back to make a list with the worst thing first - so that if you don’t get all the way down the list, you have got the important stuff done. I have then added a bit from my own experience and know-how:

Make your list. Put everything down. Do this in pen or pencil, but do it in handwriting. This is important.
Now re-write the list so that the worst thing is at the top.
Now try to get the list down to five items, and write it out again. [What you can do is to try lumpung things together. Like: you have pain all down your left side - left eye, left arm, left leg. This gives you one item, with three bits to it. You might decide that the eye pain is important on its own, and that you want to keep the limbs separate.]
Two things stand out: your balance has got worse very quickly, and your walking has got worse very quickly. So, you want to lay that on the nurse early on. Never mind what you told the Neuro weeks before, you are bad right now! And you need help right now!

I guess that I could come up with a list with just four items on it. Your story starts: “No, I didn’t come here with a great big long list of complaints, but ither are a few thing that are really bothering me …” So why all the handwriting? Simple, you will remember the list better when you have written it out by hand a few times.

So, get your story straight, in your head, in your own words - but just aim it so that she has to do something about it RIGHT NOW. Get a result, and come back and tell us all about how it went.

Geoff

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Many thanks folks defo food for thought gonna print out and take it with me and a huge thanks Geoff thats helped loads and i think you are very very right unfortunately my tremor is bad i cant write and can only type because my wrists are resting on the edge of the laptop but gonna type it out a few times , i think the top is gonna be the neck followed by general weakness and then the hug and limbs but gonna get started this afnoon and go over it each day until weds night and hopefully i will have it cracked again a huge thanks to you guys and gals its very much appreciated

respect sean

Hi Sean, hope your appointment goes well on Thurs. I’d just say to you, explain your symptoms as if it’s your very worse day & don’t make light of anything, it’s been a while since the neuro last saw you.

Good luck

Rosina x

Pigpen. That is so true, I did just that at first all happy and jokes galore, it was me being brave, you don’t realise at the time if you have a pain, if your not happy with the dead foot hand knee what ever, tell them exactly or you will be given or not given something you do or don’t need?? Don’t just take anything cos you think it’s going to make you better, because there is nothing that will at the moment, just disguise it for a while, and give you all sorts of possible tummy problems as well. Doh. This is defiantly a learning prosese.

many thanks folks all typed and ready to go 2pm so will give update when iget back many thanks again

respect Sean