Forum

MS is for life, not just on Tuesday's

Hi eveyone

I was dx 2 years ago & have luckily never had a relapse.  I dont know what one feels like, what to expect, how to know if I'm having one, & what to do if i thought i was.  feelings im sure a lot of us have or have had.

Over the past week my back has been sore to touch, my skin is numb and I am experiencing some occasional pain.  This has slowly spread around my side and onto my front, down my lower back & buttock, upto my neck & in my shoulder. This is very scarry, so I contacted my local ms helpline, & this is the recorded message I got

"This office will be closed for 4 weeks, but you can leave a message on a Tuesday"

I'm sure anyone in my position will understand my frustration with this, so I contacted my GP.  He was unsure of my symptoms told me to contact an ms specialist & sent me away.

Can anyone please let me know if they have experienced these symptoms and whether this could be the start of a relapse And what I should do

Many Thanks Andrea xx

 

Hiya

You could contact the 0808 number on here.................(its at the bottom of this page)

It may be a relapse-its impossible to tell. Your GP could give u a drug to help with nerve pain. I find that cooling the affected area gives me some relief. Perhaps the 'knowing' that it is MS related and is common will reassure you and you maybe be happy to sit it out? That depends on what you think/feel your body needs.

Perhaps the best thing is the number on here initially-they will suggest something I am sure.

Take care.

Ellie x

Hi ellie

Thanks for your response, I did contact that number yesterday as a last resort, and although they were very sympathic, said they cant give medical advice.

I am pretty happy to sit this out and see how it goes, I'm just so angry that my initial support has let me down so badly when you are really scared and need them most.

When you dont know whats happening to your body, just that reasurrance that this is normal for ms is sometimes enough.

Thanks

Andrea xx 

Hiya Andrea

I am an 'oldie' - 7 years down the line. Nothing surprises me anymore re MS but I recall the first few years. Its claimed by various folk/agencies that help is out there-which is brilliant but I have found that at the end of the day its down to yourself. By that I mean that even when you ask theres restrictions and barriers. Thats why I hoped that the reassurance that what you described is common in MS and you are def not alone in that respect.

Before I get bombarded with thats not the attituede to have.............there is practical help re aides etc but sourcing the right place then having to justify what help you need is soul destroying but thats the way it is.

I find that me getting on with it, including any help I can access is empowering-but in the early days when its all so new and scary then I appreciate thats not easy. It helps me to think that way but I am fully aware thats not for everyone.

I hope that you are able to source whatever help you need in a way thats acceptable to you. I hope that I have contributed in some way by reassuring you that what you are experiencing is very normal to MS.

Take care, Ellie x

Hi Andrea!

Do you have an ms nurse?  When i have any problems at all i now ring her.  She is so helpful and knows so much.  I hardly ever bother my gp any more because he usually hasn't got a clue.

I had sore skin to touch once in my arm and was told it was the ms symptom - neuropathic pain.  The nurse sorted out medication to relieve the pain i also had.

I was a little scared to ring at first but she put me at ease and if this is a relapse it would be better to ring her sooner rather than later.  She is there to help you.

Best wishes

Teresa. x

Hi Teresa,

My MS nurse is part of the team of the ms helpline I have been given, I also have his mobile number which I did ring, only to receive a similar message. Usually, I also find the MS nurses fabulous, but when I needed them the most, no one was there. 

I see my assigned ms nurse 6 monthly, but he always makes me feel like I am complaining about nothing, and is very unsympathetic. He has never really given me any help in understanding ms & how it can effect you.

So for 4 weeks I will have to deal with this myself, I have no choice.

Many Thanks

Andrea x