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Ups and downs

WOO HOO!!!

FABULOUS!

What an absolutely WONDERFUL nurse :slight_smile:

I’m going to have a grin on my face for quite a while with that story, lol :slight_smile:

Kx

You have struck gold with your MS nurse Laura! Well done her! I am sure you feel much better knowing that she will go in to bat for you. Good luck re: your eyes. You know where to go now if you have problems! Teresa xx

That is wonderful! Pity you had all the stress to cope with, but an excellent result.

Please don’t feel awkward about your next visit to the surgery. It is unlikely that the call from your formidable MS nurse was the first one the practice manager has had to field regarding that GP.

Alison

x

Hi Laura My community MS nurse is very like that…on my side, fighting for me. She’s great. I would suggest what has been suggested to me…the MS society are currently taking nominations for achievement awards…nice recognition for their work, over and beyond…maybe a nomination in the offing ? Xx

Mrs H yes i will definitley look into that - after today she deserves it!

Also she told me once i have met with neuro to discuss DMD eligibility to contact her straight away, in her opinion i am but If i get a no i pity my neurologist! (not sure he will listen but worth a shot)

Thanks everyone for your support, it really helps me from loosing my mind!

Can’t believe how this has all turned out (thread title seems more fitting today than i did last week!)

I am definatley going to lead by example!

Laura xx

Ps) I do apoligise for the child like spelling - starting University in June maybe i might learn me a thing or two!!

Hi Laura,

A real pleasure to meet you although I am sorry it had to be because you have MS and a sodding relapse into the bargain.

I was reading through this thread thinking about my reply to you and then I go to the post aout your amazing, wonderful MS Nurse. What a star

What I was thinking of saying to you is how important it is to bulid up a team of people around you that can help with managing the MS. Because the disease effects so many different parts of our bodies and can have so many different impacts on our lives I reckon it is really important to look at managing it as a team effort and a multi-disciplinary team at that.

It isn’t easy and it doesn take a bit of time to even realise who might be needed on your team but the fundamental members are a brilliant GP who can act as a collecting and dissemenination point for all your medical needs. I have sacked several GPs before finding one who works for me and we now have a good relationship. She has gone out of her way to educate herself about MS (including going the specialist seminars on pain management) and she liases with other Drs for me.

Next on my list is my MS Nurse who is my gateway to my neuro and all things MS specific such as DMD advice, reporting a new symptom or getting relapse management advice.

I have had a lot of MS vision problems and my eyes are an ongoing problem for me so an excellent opthamologist is essential for me and again I tried a few until I found a match. But Adam is great, he will see me the same day if needs be and again he too has made a point of studying up on MS neuro-visual stuff.

And then I have my team of physios and OTs. Hmmmm, Physio is brilliant, adore her and we have a great time and she is super fantastic and understanding of neuro-fatigue issues and neuor-plasticity for rehab but my OT… Well, let’s just say she is still a work in progress and is on probation with me at present. If she doesn’t pull her thumb out she’ll be going the way of her predecessor and I’ll be looking for a new one

I then have another level of essential supports too and that is my daily care team and Disability Funding people but you probably don’t need that at this stage . But I have home care come in daily to assist me and again it was the same thing, they had to be the right people for ME.

Underneath that is a group of people I thankfully don’t have to see very often at all but who I do know and like and so that when I do need them I know that I can trust them. This includes a continence nurse (luckily my MS clinic has one who specialises in MS continence issues) and a speech pathologist for swallowing stuff and a counsellor with the MS Society who was an absolute life saver, especially in the early days.

So the short version of this long ramble is that as MS is a disease that effects so many parts of us so we need to build a multi-disciplinary team around us to help deal with all the things that can go wrong. And because when we need those people we are usually at our lowest ebb, they need to be people we trust, who are knowledgeable and who are in there batting for US.

It took me a couple of years to get my team in place but by God it has made life so much easier since then

My suggestion is that when you have recovered from this relapse and have the energy, it might be worth making a list that will be relevant to you and making appointments with those people and getting on their books before a crisis arrives. That way when you need them in a pinch you already have a rapoort with them and they also have a base line idea of you in remission and so they can easily see any worsening when the MS flares up.

Team MS… you don’t have to do it alone ad it sounds as if your MS Nurse would be just the person to help with this plan, especially if you need to educate any professionals along the way. She is absolutely brilliant!

And you are brilliant too. So recently diagnosed and yet managing so well and with such a strong outlook on life. I hope this relapse b**gers off soon and you feel better.

All the very best ,

B

Wow thank goodness you got a fairly good outcome in the end hun. Your m.s nurse sounds like she was fabtastic! Glad your feeling better. Its hard with children. I have a three year old and thats hard enough so two I imagine makes things a lil.more challenging. One thingi remember my GP saying when diagnosed in 2004 was do not assume everything you get is down to m.s. Some symptoms are typically m.s but people with m s are like everyone else, theu can get other problems unrelated to the condition. When I was pregnant I was admitted with pre eclampsia. They put me on tablets and said if I get a pain in the middle of my chest. Kind of area to ket them know as this is a warning sign my placenta is breaking up. I said well I do have that on and off but put it down to the m.s hug. There response, oh we hadn’trealised you had m.s so it is more likely that. 24hours later I delivered very quickly my beautiful son . Very quickly I lost consciousness, was rushed to theatre. I lost 7.5pints of blood, was very poorly, four blood transfusions, several drips injections etc etc, couldn’t pick my baby up. All because my placenta had crumbled and they assumed the pain was m.s. So just goes to show doesn’t it its not always m.s. But glad you got sorted hun x

Lisalou - thanks for the advice it is important, i think it’s far too easy to be fobbed off when you have a chronic condition. yes two kids do make it hard but life is more interesting with a challange! Your birthing experience sounds awful, glad you made it through ok. Hope everything works out for you on Rebif, look forward to finding out how you get on x

Brog64- Thank you so much for your kind words, this forum really is amazing. I am planning to stay with 2nd GP and when i have the energy i will think about sorting things out properley. I estimate that to be in 2025 when my youngest is 18!! lol Glad you are finding things easier - hope your OT redeems herself! Best wishes x

I will keep you posted. We are sticking with the one and he is a lil challenge on his own…haha! Not gonna risk a birth like that again. Good luck hun. X x x Oh in case you do decide steroids they have worked for me but they certainly aren’t for everyone. You do what yoi feel you need to. Take care x