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MS Advice

Peyton Manning

Hi, my girlfriend was recently diagnosed with MS and to be honest, I cant bring myself to ask her what it really is. Can someone help me out and explain? Ive searched the net, but Id really just like it in plain english, and what the ramifications of it are, i.e is it fatal, disability etc....

thanks.

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snorlax

this is a great site for explaining things in english http://mayoclinic.com/health/multiple-sclerosis/DS00188 . I hope everythng turns out well with your girlfriend. also try http://www.nationalmssociety.org/about%20ms.asp also try the MS society in Ireland (they send you out some leaflets and offer some support services) http://www.ms-society.ie/ MS Helpline 1850 233 233

FranknFurter

As somone who has "chronic progressive" form of MS, all I can say to you is that the key for you lies in education.
The internet is a very valuable resource, make the most of it.
Visit MS boards like these, get your information first hand.

Most importantly though, ask your girlfrind straight out to explain it to you, ask her any questions you may have, if she dosent know, find the answer *together*.

Telling you, and knowing that you accecpt it all, may be a weight off her shoulders, more than you know.

It is somthing that you live with, it is not "fatal" it is usually progressive (but not always).

Having your relationship last will depend on how you accecpt and educate yourself about this disease.
I'm in a relationship myself, and although right now I'm going through a particularly bad month, (Im convinced its to do with the heat), knowing my hubby is there makes it so much easier.

b

Peyton Manning

I really dont care if she loses control of every inch of her body, ill always be here for her because I do love her. But what are the odds of her becoming wheelchair bound?

Pipp

Archimedes wrote:

I really dont care if she loses control of every inch of her body, ill always be here for her because I do love her. But what are the odds of her becoming wheelchair bound?

Hello Archimedes,
Firstly, let me commend you on your attitude. You are obviously very commited to your girlfriend, and she'll need you to be at the moment.
I was diagnosed with MS in 2003 so I have been through the same situation your girlfriend and I know how confused, scared and overwhelmed she must be feeling right now. Its an enormous thing to deal with and she'll need as much support and love as she can get. Time is another thing shell need, time to learn about the condition and to decide how she is going to deal with it, as deal with it she must.
What kind of MS has she been diagnosed with? If it's the Relapsing Remitting kind then she will have periodic relapses or attacks of nerve inflammation which will require IV Steroid treatment in hospital. These relapses can be mild or severe and will be a sudden escalation of symptoms combined with new symptoms such as vision loss. These relapses eventually resolve and the person either recovers completely or with some left over symptoms that dont really go away. This is called Remission. Most people with MS go on treatment as they are designed to minimize relapses and prolong remission time. Your girlfriend should discuss all these treatment options with her doctor.
Most people are initially diagnosed with Relapsing MS, as I was.
Relapsing MS can sometimes unfortunately turn into Progressive MS where there is little or no remission and sadly impairment and disability build up. However, there is absolutely no guarantee whatsoever that this will happen to everyone that is diagnosed with MS and most people live perfectly well with it. Walking with a cane is sometimes as impaired as people get. Everyone is different though, and looking after yourself, being on treatment, minimizing stress and generally taking it easy is the best way to minimize relapses.
Anyway, I hope I've helped you in some way to understand MS and what is happening with your partner. My own personal situation would have been much more difficult to deal with without my wonderful husband to be, his support and understanding really helped me get to grips with everything. Be there for your girl and learn as much as you can about the condition. Thats the best way that you can help her right now.

Peyton Manning

Thanks so much for the information. She was in hospital the other day to get the test done where they take fluid from her spinal column for testing (I forget the name of it?) but the doctor was a complete fool. It was his first time doin this test and he gave her the wrong anaesthetic, and whenever he touchd her with the big needle and she told him it hurt, he told her to be quiet and it was meant to. In reality, its only a 15 minute procedure (so I understand). He had her in tears until a senior doctor came in, and she did it properly and even told my gf that the other doctor should not have continued when she told him it hurt...

FranknFurter

Unfortunately a spinal tap usually does hurt a bit, but thats no excuse for his attitude and incompetence. As soon as she said not to go on he should have tried to calm her and stopped until she said it was ok to continue.
The test is done to extract CSF from the spine (Cerebal - Spinal -Fluid). Make sure you tell her that the wound MUST be kept clean, an infection there could be extremely dangerous. If it were me, (I assume she has a medical card), I would go to my GP *daily* to have the dressing changed whether he says its needed or not.

Im really annoyed by that kinda attitude, for years I put up with being poked and prodded by groups of ""student doctors" for years until I put my foot down and informed all my consultants that it was not accecptable.

Tell her, she is perfectly entitled to say she wants an experienced doctor as opposed to a student, it may mean a longer wait but for anyone with a long term disability it is often worth it. Let the students practice on those people with temporary conditions rather than making an already difficult life even more so.

Stick with her and be there for her, the love and support of a partner is often a major factor in living with MS, without mine I would be lost, and probably never leave my bed.

b