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Don't know what to feel...

… I had Neuro appt yesterday; relapsing-remitting MS was confirmed. Of course it wasn’t a total surprise, having lived with knowing it could be a possibility for many months, but in some ways, having it confirmed by a Consultant, actually hearing it said out loud was still a shock, if that makes sense…?

yeah, i understand.

a bit like out of one limbo and into another one.

it will take time to sink in so let yourself have that time.

now for the positive spin (sorry) - you have answers now and know what is causing mayhem in your body.

knowledge is power so when you next see your neuro have an idea of which Disease Modifying Drugs (DMDs) you are interested in trying.

there is a good fact sheet on the MS Trust site.

good luck and come back here with any more questions you have.

carole x

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Hi,

Looking back at your previous posts, it sounds like you’ve been living with on and off symptoms (relapses) for years and the fear of MS for just as long.

I am sorry that your worst fear has come about. After hearing from others in your position, there’s a kind of relief, that f8nalky there’s a diagnosis. But that is completely nullified by the dreadful words ‘you have MS’.

So for years you’ve suffered from one thing after another and put with it pretty stoically, and this is your reward!!

I should think you could do with a good scream. And I wouldn’t blame you at all.

But at least now you can get some decent help, from a DMD and an MS nurse. So there is something a bit positive.

Sue

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Welcome to the club you don’t want to be in, hugs

Hi,

I’ve read some of your older posts and I saw you had LP in September which confirmed ongoing inflammation but is now the first time you’re back at your neuro since you recieved the letter confirming the above? I just can’t figure out why, when ms is confirmed, it should have to take several months before actually getting a new app. that, again, confirms ms and still you are not on medication? Everywhere source of research I read and recommendations are that once diagnosis is confirmed you should be put on medication as soon as possible to stop more damage…I’m trying to get my head around this as I am in limbo land and have been their for the past year and it feels as if, if ever, I won’t be diagnosed until my fifties( 41 now)/=

If I’ve misunderstood anything be sure to tell me but I hope that you get the support you are entitled to now and that you can get on a medication that works well with you. I can totally relate to one of your posts when asking about support when not yet diagnosed with ms cause that’s where I am right now and there is no support what so ever feels more like they want to get my next mri done so they can dismiss me and my symptoms…

Anyway I admire that you have coped with your symptoms for so many years, but you just have to I guess…

Better to have a confirmed diagnosis than not knowing and just guessing. The anxiety is soul destroying.

Hi PG76 Thanks for your reply in response to my post. I actually had the LP back in July, received a letter in September and only finally got to see the Neuro in December, some 19 weeks after having the test. I was appalled that information like this would be communicated to a patient via letter and then just leave them in limbo for the next few months without anyone to discuss it with. However, it is what it is and quite frankly, I didn’t have the energy to argue the point with them. I was put on a short course of high dose steroids, but have been unable to take them. The hospital pharmacy advise that these are not available in a coated or capsule form… So I guess taking steroids won’t be an option for me going forward. I have lived with the double vision for nearly 2 years, so just cope as best I can. It’s the depression and anxiety which are causing me the most problems right now, and nothing any Neuro can do about that. I have reached the point where I don’t really care anymore. I hope you get some answers and support a lot sooner than I did.

Ok I understand…Thanks I also Hope for answers pretty soon.Did it take long for you To get diagnosed because of diffuse symptoms or lesions not showing in the typical areas of the brain or other things? I’m really scared about not having any changes on my next scan cause then I’ll be stuck in limbo forever…

My symptoms have been spread over a number of years, with ok periods in between. I think the Neurologist looks for a pattern before jumping in with a dx, and unfortunately sometimes recognising this pattern takes years. Unless you have severe symptoms, it seems to me to be more of a process of ruling everything else out, before ruling MS in… My last 2 MRI scans didn’t show any apparent changes, it was only the result of the LP which clinched the dx for me. It’s incredibly frustrating I know, but I guess they want to be as sure as they can be, before handing down such a dx.

I see. Have you had more than one LP? I have had one and it didn’t show any active inflammation but 6-8 oliglocanal bands. Did you keep going back to your neuro over the years or did they want to check you up regularly? Sorry for asking so many questions but I guess it just feels comforting to listen to other people’s who know what you’re going through…

I’ve only ever had 1 LP, several MRI’s / Catscan’s, plus Evoked Potentials tests. Only got referred to a Neurologist in 2015 and that was via a Consultant at the eye clinic.

ok, thank you for answering my questions=)

If a person has mild relapsing-remitting MS, is it really worth going on DMD’s? I’ve been told the success rate is pretty low and then you have to factor in potential side-effects - am thinking better to leave well alone while I’m not too bad and just take a wait and see approach??

Any thoughts?

Eastendgirl for me it was a simple desision, DMD reduce the likely hood of relapses. We do not know what a relapse will do to us. The risk of the ‘wait and see approach’ is a nasty relaps could come along that leaves us damaged ! So for me my ‘magic blue pills’ reduce my fear as well as ‘hopefully’ any further damage.

for me I need to give myself the best chance possible. Your desision is yours to make, at the very beginning of taking them I did nave some stomach issues, but now my body has got used to them all is ok, so no down side of taking them for me.

good luck with desiring, big hugs

In denial and feeling very low.

Even though I still have symptoms, have had various tests, finally got confirmation of dx of MS in writing… but I’m still convinced they’ve made a mistake.

You sound really very depressed. Have you seen your GP and asked them for some help to get over the diagnosis?

And do you have family/friends supporting you? Do they understand?

Did you eventually end up deciding to take a disease modifying drug? Or were you in fact offered one?

And do you have an MS nurse? If so, is s/he supportive and helpful? If you don’t have an MS nurse, is there one who you could see?

Are you still experiencing symptoms of MS? After the LP, and MRIs, why do you doubt the diagnosis?

Sue

Thanks for your reply. The depression has been there for as long as the symptoms, maybe even longer. I’m on medication but it doesn’t seem to be working anymore. I was allocated an MS Nurse but found the time with her rushed, she was too brusque and business like, there was no empathy there at all. She seemed more concerned about me informing the dvla of the dx and giving me a load of literature to read on DMD’s, expecting me to make a decision by the next appointment. The low mood has taken over; I decided I didn’t want to go on any more meds and cancelled further appointments with the MS Nurse. Probably not the wisest move but to be honest, I’m past caring.

Eastendgirl, please see your gp.

I really hope you have a supportive one. It may be worth booking a ‘double’ appointment, to make it clear you need to be listened to.

Please don’t give up on looking for help with your symptoms. It’s great that you feel you can share how bad you are feeling with us. I am a year down the line, am lucky that the one symptom I don’t suffer from is depression, but I still find it very difficult to accept/ deal with accepting my ms.

Sending big cyber hugs.

After a few weeks of feeling hyper and overwhelmed, the past couple of days I’ve crashed, feel totally detached from everything and everyone. Counsellor urged me to go see GP, she never gives advice so must have been a bit concerned. Got appt to see a doctor, said the only thing they could do was tweak my meds, reduce the one I’m on and introduce another alongside it (something MH services said couldn’t be done with this particular type of medication)… Review in 2 weeks. Messing around with the medication when I’m feeling so bad worries me a bit, but suppose there wasn’t anything else they could do. If it has the effect of pushing me over the edge - result. No more depression. No more MS symptoms. I don’t mean to sound flippant… this is how low I am right now.

Eastendgirl, you are not alone.

I have seen others say the ms sosciety help line is fab.

Hope you like my penguin picture, when I read posts like yours I wish I was able to give a real hug. Sometimes on this forum I feel like I want to be the penguin on the right. Sometimes I am more like the penguin on the left with others on this amazing forum being the one on the right.