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panic over seeing ms nurse

I have had my first panic attack since being told I have MS. I have an appointment to see an MS nurse on Friday. I was asked if I wanted a home appointment or come into the clinic. I chose a home appointment, as going to the hospital was for sick people, and I didn’t want to be surrounded by people with MS!

MS nurse will be bringing a selection of medication. I can chose the ones I feel most comforable with. I so wanted to start on medication as I thought doing something would make me feel more in controll. Now I am thinking I am going to be having injections that at best will leave me the way I am feeling now.

why didnt you want to be surrounded by people with ms ???

You can take a different view of this, Neil,
“Now I am thinking I am going to be having injections that at best will leave me the way I am feeling now.”
If the injections keep you feeling the same way as now - for several years - this could be worth the hassle.

I just wish I had started when I could have, instead of putting it off for six months. Three relapses in that time, and two more while the Copaxone was starting to work. Who knows, maybe I would still be rated 1.5 on the EDSS and not 6.5. And that was in just 3.5 years. Still, hindsight is a wonderful thing.

Geoff

Hello neil

It’s a stressful time, when you’ve just been diagnosed…so much to think about and decisions to make. Have you read up on DMDs and had any thoughts on which one you prefer. Surely it can only be a positive step to try them and you have the support of an MS nurse, so make full use of him/her.

The more you ask for help and accept support, then hopefully you won’t feel as anxious.

Take care and good luck with the appointment

xx

Many thanks for your replies. panic over. I really do not want to go back to the way I was six months ago. I found it difficult to walk, use my hands for anything.I am hoping to get something for the pain.

I am concerned about the future, and am not ready to be loud and proud about having MS.

Thanks Blossom. I haven’t read up about the different treatments. MS nurse is bringing a selection with her, and said she will talk through the pros and cons of each one.

Apparently I have had MS for quite a few years, but only small relapses which I missed until about six months ago which was awful.

Thanks Doctor Geoff. I know I need to start on medication soon, as I want on holiday to Turkey last week, and felt 99%

Now back to normal life(less than a week) the problems are coming back.

Anonymous - Suppose it is because it has only been a matter of weeks since I have been diagonised. t is not a club I would have put my hand up to join.

I have told only immediate family and very close friends. I am not ready to be in a group of people to discuss MS. I am not loud and proud.

And also a little I am not ready to seethe effects MS has had on other peoples lives.

This is both selfish as I worry for my own future, and also with compassion as when people say about the pain they live with - I know.

Why are you Anonymous?

Sorry typing mad. My name is Neila

Doctor Geoff

I would still be rated 1.5 on the EDSS and not 6.5.

What does the above mean?

Don’t worry: most of us - even those who have had MS for a little while - will know exactly what you mean in this context by not wanting to be surrounded by peole with MS! We remember what it is like being newly dx.

Re meds: you WILL be doing something to make you feel more in control. Never mind ‘feel’ - WILL.

Staying the way you are feeling now is an OK target until you have a better idea. Bottom line: you don’t want to feel worse if you can possibly help it, and the way of helping yourself is to do what you’re doing and get on a DMD.

This isn’t a good time for you. Feeling pretty bad at this stage of being newly dx is pretty much inexcapable. But have faith that things will settle down and you will reach calmer waters.

Good luck.

Alison

p.s. EDSS is a scale to measure disability. Lower is better. Keeping EDSS as low as possible is what DMDs are all about.

Hi Neila, only just picked up your question. Sorry.

The EDSS is the Kurtzke Expanded Disability Status Scale. As scales go, it is pretty dire, but it is the one almost everyone uses world wide. Like Alison said, and its name suggests, it is a measure of disability; all too often it gets used as a measure of mobility. You can read about it here,

http://www.va.gov/MS/Professionals/Diagnosis/Kurtzke_Expanded_Disability_Status_Scale.asp

Worth getting clued up on it, as it can be used to see if you qualify for DMDs, and maybe other thing depending on your care Commissioning Group. The other thing you can do before Friday is to do your own reading up on the DMDs - then you will have an idea of the questions you should be asking the nurse. The MS Decisions website is the one a lot of us have used:

http://www.msdecisions.org.uk/

Hope this helps

Geoff

Hi Neila We all need time to come to terms with our diagnosis and only you can decide to whom & when you’re ready to “come out”. I was dx in January '14 and for me the best thing I did was to get it off my chest, tell all and meet up with fellow MSers. The wealth of information these folk have will help you over the months ahead to get a grip (no pun intended) with what’s available out there. I’ve been lucky to have fallen into a group which meets socially twice a month and through the experiences of others I’ve now found myself going to the MS therapy centre as well as plucking up the courage to send in my PIP forms. Good luck with it all and hope my two penny’s worth helps. Paul

Hello :slight_smile: know the feeling. I got the diagnosis yesterday after a 2 year wait. I respect your feelings on it. Seeing people with severe MS does make you think, but it’s nothing to be ashamed of. I guess I’m loud and proud. I wear the. MS ribbon my bag. I’ve also bought the tee shirts :smiley: everyone copes differently Hun. I want an MS march me :slight_smile: Take time to adjust and don’t be in no hurry, that’s what I’m doing. There are amazing people on this forum. I would have gone mad without this place. I’ve had amazing support on here. The support line is brilliant too. You’re not alone, and when you’re ready, everyone here will help xx