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I'm newly diagnosed.

Hi, I joined here a little while ago and I hadn’t been diagnosed with MS but now I have. I am and waiting for an appointment at St Georges hospital that my Croydon neuro consultant started to arrange while I was still in the surgery. It’s just a waiting game now I guess. Best wishes, Jo.

Hello Jaydee

I can see from your previous post that you were anticipating the diagnosis. Knowing it’s possible and actually hearing the words are two different things though.

I can imagine that you have all kinds of emotions running around your brain, from relief of having it confirmed to fear and anger that it’s happened to you.

Hopefully soon you will be assigned an MS nurse, and given some options for disease modifying drugs. Meanwhile, have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid This should give you some information to help you make a decision when the time comes (I’m assuming you are a) diagnosed with relapsing remitting and b) that you will choose to take a DMD).

Best wishes

Sue

Welcome Jo. Their are some amazing people on here who have loads of knowledge. Also the empathy is amazing. When I am having a ‘wobble’ this fourum gets me through. I am working on finding ‘real life’ out lets, but for true understanding of how it feels to have ms which is so so hard to explain to others, this is a really great ‘safe place’. By safe I mean questions, fears etc (even) my rubbish dislexic spelling has never been criticised.

all the best with the next bit of your journey.

hugs

Hi Jo, What type of MS have you been diagnosed with? Would you like to tell us what your symptoms are? Because we may be able to give you tips on how to deal with them. What’s your appointment at St George’s for? (I had my lumber puncture done there.) As Sue says, the usual process would be to assign to you a MS Nurse. Best wishes, Anthony

Hi, Thanks for all of your responses.

I have a Neurology consultant at Croydon University Hospital. I had an rescheduled appointment from 26th February as i didn’t want to wait that long. He told me that I had MS but didn’t tell me what type I have. He phoned up St Georges, I asked why and he said to get a second opinion. I rang up both hospitals today to find out if anything had been done and there hasn’t. So I don’t really know where I am at present. I’m going to see my doctor on Wednesday. He’s really good and has managed to get me quicker appointments to what I had been given.

My symptoms have been feeling dizzy and falling down especially on stairs. I’ve started to feel really tired when I walk down to the local shops which has resulted in me in not being able to stand up and finish what I wanted to do. I get lifts down to the shops and get a cab back so I have applied to Dial A Ride for travel help and I’ve bought myself a walking frame with a seat.

I’ve had MRI scans on my spine and head, and electrical tests on my nerves and muscles.

It has really ruined the stuff I like doing. I used to go to Oxford quite a bit to meet up with friends and watch some filming of Endeavour. It was nice to go and see our favourite actor but last time I went I’d been there for about and hour and saw some action then I could barely stand. So I came home.

That’s it for me at the moment.

Best wishes,

Jo

Hi Jo

Basically, if you have had some, even if incomplete, remission from symptoms, then your MS will be classed as RR. Many neurologists prefer to assume everyone is RR in the first stages, because it can take so long for remission from a relapse to happen.

Although with some people, they can tell from the brain scans that the condition is progressive from the beginning, either that you’ve had historical relapses so you are now secondary progressive, or that you are just progressive from the outset.

By making the assumption that you are relapsing remitting though, you become eligible for DMDs - so it’s a covering all bases tactic to diagnose RR initially, until otherwise proven different. And 85% of people do at least start out with RR, so it’s a sensible assumption.

You may find that as time goes by, you either make some adjustments to how you do things (ie, get some crutches to help you to walk and stand for longer) or get some drugs to help with symptoms like fatigue. So having the diagnosis needn’t completely change everything you like to do, you just need to figure out ways to adapt.

Sue

Thanks Sue,

Is sitting down on the sofa then getting up having a dizzy spell and unable to walk, is this relapsing remitting? This happens to me everyday. It also happens when I get out of bed.

I’ve bought a MS essential book so maybe I should read that shouldn’t I.

Best wishes,

Jo

Jo

That sounds like vertigo. Which could be part of a relapse. Or maybe not!

Basically, a relapse is a new or a repeated symptom (which has been at least a month since the last time) that lasts for at least 24 hours.

The thing about vertigo is that it could be caused by a relapse, or it could be an inner ear problem that’s not necessarily part of a relapse.

And another confusing thing about MS is that sometimes symptoms hang about for a really long time. So you could have relapsing remitting MS but the relapse takes months and months to remit.

In addition to all this, we are all different and react to relapses in differing ways.

MS is a bugger for messing you about and confusing you. Even after years, we don’t always know exactly what’s happening with our bodies.

So yes, have a look at your MS Essentials book. But also, have a look at the resources on here and the MS Trust. You could start with https://www.mstrust.org.uk/understanding-ms/newly-diagnosed-multiple-sclerosis

Don’t try to learn all about MS immediately, it takes time; I learn new things about it all the time, and I’ve lived with it for 21 years.

Sue

Jo, most of the time I remember I have vertigo. Stand… Wait before moving. …sometimes I forget to & fall over or at least do a big wobble. For me it’s a constant. As are my numb hands. Good luck with this rubbish desise.

Hello, I hope you’re all as well as you can be. I keep having silly falls trying to get up and not managing. I’m also suffering with horrible backaches quite a lot now too. I received a letter with an appointment for next year, so I rung up the hospital asking why as I’m waiting for a referral to St Georges hospital. The lady told me a referral letter has been sent so I might hear about an appointment. I won’t say soon! ;0) Best wishes, Jo

Hi,

I’ve actually received a CC of the referral letter sent the Dr Blain at St Georges hospital. It was asking the Dr for thoughts on my diagnosis and investigations in an aggressive treatment. I’m wondering what aggressive treatment means. Anybody have any ideas?

My consultant also says that my first appointment with him he said I was going for a blood test, I asked him why and he said it’s be cause of my eyelid drooping. He also said there was the suggestion of a spastic paraparesis (What??). Near the end of the letter it also says repeat imaging shows quite extensive white matter brain disease.

So this letter has not made me feel very positive at all.

I’m hoping I get any information about an appointment at St Georges. I’ve been told to ring up Dr Blains secretary on Tuesday.

Sorry for giving so much information but I’m sure you’ll understand.

All I can do at the moment is chill out and watch my favourite Detective drama Endeavour and see if any of the scenes are the ones I watched being filmed. Those were the days when I could stay standing up. Last time I went to see filming I couldn’t stand up for very long at all.

Sorry for moaning. I’m apologising about moaning a lot.

Best wishes,

Jo

’ this letter has not made me feel very positive at all.’

not surprising !!!

its difficult to articulate, but for me, having ms is something very very hard to accept / find a positive. Ok, let’s be real, other than trusting a cure will be found, their is nothing ok about ms. I can find a positive in most things, but ms…umm

hugs, thinking of you at this shit time.

just realised, their is a positive, I have communicated with some very amazing & special people on this forum.

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Hi Jo You’re not moaning at all. You are living through some really scary times and giving us some detail about what the doctors have said is helpful for us to try and respond. Aggressive treatment for RRMS generally means a highly effective disease modifying drug (DMD) such as Lemtrada or maybe Tysabri. But giving you some rather mixed messages about spastic paraparesis as well is confusing things. Paraparesis usually affects the lower body not the face. So I really don’t understand that. And because you’ve had vertigo and this eyelid drooping thing, it doesn’t sound like paraparesis. (Bearing in mind I’m just armchair commenting!) Hopefully you’ll get your next appointment very soon. Let us know what happens next. We don’t count sharing your fears and worries as complaining or moaning, by the way. There will always be people here who will empathise and hopefully help. Enjoy Endeavour. Sue

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Hi Sarah and Sue, Thanks for your responses. It’s really nice to read a bit more about it from you lovely people who know about it. I really hope I get an appointment as St Georges sooner rather than later. Sue, the medications that you mentioned how are these taken? I will enjoy Endeavour immensely. 2 hours of the lovely handsome Shaun Evans is great TV for Sundays evenings. Even more so as this series has 6 episodes instead of 4. I must be off now to continue with my Proofreading course. Have a good Sunday. Best wishes, Jo

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Hi Jo

Have a look at https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid

It details all the various DMDs together with their routes of administration, average relapse reduction rate and potential side effects.

Lemtrada is the biggest gun there is when it comes to DMDs. It has an average reduction rate of about 70%. But is something as close to a cure there is. Many people who have it never have any further relapses. It’s given by infusion, over about 5 days for 2 consecutive years. So while it has the potential for some iffy side effects, it’s one that I’d have taken early in the RR phase of my MS (had it been available).

Tysabri also has an average relapse rate of about 70%. But it’s one you have by infusion once per month. It’s actually better for side effects except for one particular nasty called PML. Which you can only get if you screen positive for antibodies to the John Cunningham Virus (JCV). And then only after taking Tysabri for 2 years at least.

Both of these are only available if you have relapsing remitting MS and it’s considered to be ‘highly active’ (Lemtrada also for ‘active’). So I would expect the drugs your neurologist will discuss would be one of these two. So long as the neuros are absolutely certain it’s MS and not related to paraparesis.

Study hard, proof reading is something I’d like to have done. Reading and being paid for it sounds pretty good to me.

And then enjoy your Sunday evening.

Sue

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Afternoon, If I do get prescribed any of the medication that you’ve mentioned will it help me to get around a bit easier than what I can at the moment? Best wishes, Jo

Hi Jo

The point of a disease modifying drug is to reduce relapses rather than to improve symptoms. Although some people have had a good response to Tysabri, this isn’t the point of these drugs.

If you’ve got ongoing symptoms, you should be able to get medication to help. For example, if you have pain or spasms, or fatigue. There are numerous drugs which help with all different aspects. So when you next see the neurologist, talk about drugs for symptom management as well as DMDs.

Just keep in your mind that we all react differently to drugs. So for example, while many people, including me, find that Baclofen helps with stiffness and spasms, other people find it makes their legs too weak. It’s a matter of trial and error to find the best drugs for you.

Also, you should get some help from physiotherapy and occupational therapy. Both of these can provide help with how you are managing your physical condition.

Hopefully you’ll get some reliable answers about your MS and DMDs as well as symptom relief help soon.

Sue

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Thanks Sue. I hope I get some help soon. I really need to be able to get around again sooner rather than later. I’ve been trying to claim for Personal Independence Payment, they’ve said no. I had a meeting with some health people which included an assessment too which was a rubbish assessment because they should have assessed me after I had walked down the road to do shopping then they would have seen the real effects on me. Being unable to stand up and walk anymore. The first aid staff at Tesco have been really helpful for me, they even called my cab and one time they paid for it. My Shaun friends have managed to get tickets for Loose Women on Friday as Shaun will be there, they asked me if I wanted to go but there is no way I’ll be able to go as I won’t be standing with the travelling there. I think he’s very brave to go I hope he gets out uneaten. ;0) I’ll watch it then listen to him on the Steve Wright show. I’ve also been reading about the medications you have mentioned. The side effects look quite scary. I’d better be off to sleep as I also feel quite tired. Best wishes, Jo

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I don’t know where you are Jaydee but do you have a branch of DIAL near you? The Disability Information and Advice Line.

They are very helpful people when it comes to PIP and other benefit entitlements. You are probably aware that you can appeal against a negative ruling and DIAL could help with this. Just a thought Best wishes John

Thanks John. I live in Purley a short distance from Croydon. I don’t know if I have a DIAL branch near me. It would be helpful if I did.

I do really want to appeal the PIP decision. In my opinion it wasn’t a good assessment. It wasn’t done at the best time when I’m suffering the most.

Best wishes,

Jo