peacezone 05/04/18
Last reply 2 months ago
Recent diagnosis

Hi, I’m very recently diagnosed, last month in fact. I’m 36 mum of three and soon divorced, so all of this had happened very quickly and is Very overwhelming. At the moment I have hardly any symptoms apart from numbness but I’m really scared of getting some of the symptoms and whether they will remit. I haven’t seen my specialist yet as the neurologists didn’t seem to think there’s any hurry. I’m worried as I don’t know anything about disease modifying medication, and does the relapsing-remitting MS always change into secondary progressive MS?

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vixen
2 months ago

Hello @peacezone, sorry you are going through this overwhelming time at the moment. I think there are one or two folks on Shift from the IOW including me, although I don’t live there now. You’re going to have to force their hand a little, as it’s important that you get to see a neuro as soon as possible. Does the IOW have an MS nurse service? It’s important that somebody takes you through the medication options so that you can make an informed choice about whether it’s an option you choose to take.

Please take it from someone who has been there, and try not to waste time worrying about what might happen, as it’s absolutely impossible to know these things. Stress and anxiety is the worst enemy of MS, and can in fact trigger a temporary worsening of symptoms, called a pseudo-exacerbation. So, you could start tomorrow by calling PALS advisory service at St Mary’s, who might be able to tell you what support is available for MS patients.

It’s fortunate that you have minor symptoms, so you need to focus on maintaining a real healthy balance. There is lots of support on here for you, you can ask questions any time and everyone here will understand what you are experiencing and have concerns about. Take a deep breath, look after yourself and make a pest of yourself by getting the ball rolling with your GP/neuro xxx


peterfrancis
2 months ago

Hi Peacezone, sorry to hear of you diagnosis, feeling worried and confused is perfectly understandable and totally normal. I’m still getting my head around my diagnosis late last year of Rapid Secondary Progressive.

Will you RRMS become SPMS?… Well at some stage yes but that could be in many years time depending on what treatments you will be taking that could stave off any progression.

Your MS Nurse will give you all the info you require, if in any doubt always ask questions.


peacezone
2 months ago

Hi Vixen! Thank you for replying. Yes, there’s a nurse service, my neuro in SH said, but I don’t know how to access it as I haven’t received more information yet, they’ll probably tell me when the specialist visits St Mary’s. Incredibly, I am mostly managing to avoid stress, as I knew about its effects, I have made an effort to step away from the drama of my first trauma. I’ll try not to worry about the future, but will definitely ring the PALS, as I’m still reeling from the diagnosis and relying on Google is not very smart. 🙂


peacezone
2 months ago

Peterfrancis, thank you for your reply, too. Sorry to hear about the Secondary Progressive, it must be hard to get your head around it. I am finding this already so overwhelming, as it came out of the blue completely.


peterfrancis
2 months ago

@peacezone, yes I can understand it all coming out of the blue for you. I have Type 1 Diabetes too and had been not been feeling right for quite some time before SPMS Diagnosis but I just thought my Diabetes was giving me problems. I developed a tremor in my left hand and forearm along with loss of balance, so went to the Doctors and she referred me to see a Neurologist, he did some initial examinations and sent me for an mri scan. Numerous lesions were present on the brain and brain stem, turns out I’d had MS for several years.


peacezone
2 months ago

It seems to be quite a sneaky illness. What i’m curious about is how randomly it seems to appear. I’m fairly active, and no family history of any neuro problems. They seemed to think it may be linked to my childhood travels, ie. migration, but tbh who knows really? I had several lesions in my brain too, and three in my spine.


edmontonalberta
2 months ago

@peacezone

Sannakaisa – life is a journey & we all have the same destination; try to enjoy the drive s much as possible…

Soon divorced; mother of three – you have quite the challenge ahead of you. However the fact that your Neurologists don’t think there is any hurry is a good sign. This gives you time to focus on more important things.

Your diet & eating habits will slow MS down. Vitamin D & Omega 3 daily. No red meat or processed meat, no eggs, no milk is step one. Fish and/or chicken, plus vegetables should be staples of your menu. Start with this while you figure things out. There are other things I am following but start with this… Good luck.

Gord


peterfrancis
2 months ago

@peacezone, Yes it is one big mystery with myself also, same for everyone with MS too. There is no solid reason as to why anyone gets it, just one of those sad, unfortunate things but it is more common for women to have it than men, why?…. nobody knows for definite, lots of theories but nothing concrete.


peacezone
2 months ago

@edmontonalberta Thank you for your strengthening words, I will look into the diet and supplements more, but as soon as they suspected it I started on krill oil and multivitamins, though I think the vitamin d should be more than on regular multivitamins. I eat fish and vegetables aplenty, so shall continue. 🙂


grandma
2 months ago

Hi .Sonny, your origins might have more to do with your diagnosis than you thinkk, ms is more prevalent in Scotland than in England, and a lot more prevalent in Nordic countries, in fact many years ago when I was on holiday in the Canary Islands they hadn’t really heard of it, yet had I been on mainland Spain it wouldn’t have been such a problem, but a relapse on holiday is no joke whatever the circumstances.

A diagnosis today is no longer the life sentence it used to be. Medical Science has moved on and there is a huge range of drugs available which there hadn’t used to be. Even if you decide not to go down the DMT route there is a lot of people out there to listen, give advice, have a moan with, whatever takes your fancy we’re always here😍


grandma
2 months ago

By the way note to peterfrancis, there are more women than men because we are born with ms but it takes a ” major trauma to the body” to set it off. Men don’t get pregnant!


peterfrancis
2 months ago

@grandma…. “Men don’t get pregnant!”.

Not yet they don’t but give it time…. Surely some madcap Scientists are working on it somewhere in the world with too much time on their hands.

Women are born with MS?…. had not heard/read that before.


stumbler
2 months ago

@peacezone , there is an MS Nurse on the IOW. It’s

Elaine Morey
01983 552094

Give her a call and explain your recent diagnosis and see if you can meet.


peacezone
2 months ago

@stumbler Thank you. I knew her name but wasn’t sure whether to wait to see the specialist in September or try get hold of earlier. But I have lots of questions and feel like I was left a bit in limbo after they came up with the diagnosis and meeting up to talk future treatment.


clareh
2 months ago

That is interesting @grandma – both my relapses that led to diagnosis were after having my two babies (both about a year after giving birth though!). I’ve always thought there was a connection but thought I must be overthinking it!

@peacezone although diagnosed a year I’ve only just started Plegridy injections (on Friday!) so now it feels like it’s all becoming a bit more real…

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