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Diagnosis Journey

Hi all,
I am now back home following my most recent hospital stay, where we have received some news by way of a diagnosis. The diagnosis, though difficult to discover, is also in some way a relief as it explains all of my symptoms and health issues over the last few years.

They originally thought I had contracted meningitis post opp and had me on antibiotics, antivirals and steroids for 4 days! Then they did a head CT, two MRI’s on the brain and spine were performed (a week apart) as well as a barrage of blood tests (to rule everything else out) and two lumber punctures (took them 7 attempts!) where they found Oligoclonal bands.

All the results were then passed to a Consultant Neurologist as they also discovered demyelination with multiple periventricular white matter and subcortical plaques in my brain.
The hospital neurologist then brought a confirmed diagnosis of Multiple Sclerosis (did a physical exam, told me and walked off!).

I have been battling ill health for quite some time (ME, Fibromyalgia, multiple bowel surgeries, Peptic Ulcer disease etc), so does this mean I’ve unfortunately been misdiagnosed for all these years? It wouldn’t change the overall outcome I know but still ticks me off if that is the case!

Hello Darrell

I don’t know whether to commiserate that you’ve finally been definitely diagnosed with MS, congratulate you on getting a final solution, or be irritated on your behalf that you’ve suffered through so many misdiagnoses.

Probably all three are appropriate. So many people do have a tortuous route to an MS diagnosis. In the bad old days, when there were no treatments (disease modifying drugs), it was more understandable. But today, really it’s unconscionable. It’s not as if the diagnostic process or the boxes that must be ticked are all that complicated.

You are quite rights to console yourself with the realisation that nothing would have changed, had you been given the correct diagnosis initially (probably).

Has the neurologist made a distinction between the different types of MS? Ie, has s/he told you whether it’s believed you have relapsing remitting or progressive MS? If RR, then you should be given the option of disease modifying drugs to avert as many relapses as possible.

Sue

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Oh, Darrell. This just makes me so angry. I’m not a professional, but shouldn’t they have run tests to confirm meningitis before treating you for it?!

Ssssue phrases things so much better than I do, so just insert everything she said here and pretend it’s from me.

I understand that sense of relief at finally getting this diagnosis. I spent 40 years on mine, although I didn’t have to deal with the various major issues you’ve had. At least now they should start discussing DMT’s with you and figure out if there’s a way to ease your discomfort.

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Feel free to take anything I write and claim it as your own! You’re very welcome.

Sue x

Thank you, really hoping that it’s smoother sailing from here on in terms of DMD’s / treatments.
The MS OT and Physio have already been out and are making some adaptations at home, also spoken with MS Nurse, all of whom have been very helpful and supportive.

Just the Neurologist now, hoping she’s as good as the rest of the MS team! Also hoping I’m cleared to be able to drive again.

Got an ongoing battle with DWP over PIP so have enough fights at the moment with a neurologist making it any harder!

Thanks Sue,
It is a dilemma as I flip from angry to pragmatic and all points in between!

I’ve a face to face appointment with the Consultant Neurologist (Dr Archer) in Wakefield on the 29th July. I’m hoping they will confirm RRMS, especially as they treated me with 3days of IV methylprednisolone post diagnosis, which did have a positive effect. Also hoping she will start me on the DMD’s straight away, I know it’s not a cure but I would rather do all I can to slow down any further damage.

If given a choice I’m leaning more towards kesimpta-ofatumumab based on the reading I’ve done (effectiveness, possible side effects etc).

It is stunning just how many DMDs are arriving day by day. I’d never heard of kesimpta-ofatumumab before you mentioned it. It’s completely new to me. It seems to be only available to people with very active RRMS. So good luck on that one.

It seems clear (to me at least) that your MS must be relapsing remitting. If the steroids worked in bringing your latest relapse to an early end, then it must be RR. So a good DMD will be the answer to reducing the number and severity of relapses.

I tend to agree with you about anger regarding the delay in diagnosis. Years ago there wasn’t a problem in being officially diagnosed (there was a 5 year gap between the neurologists knowing I had MS and my being told!) because there were no DMDs until 2002 (when I was told!). For you there might have been a difference had you been told sooner, because the sooner you start on an effective DMD, the better your outlook.

I really hope you get sorted with either ofatumumab or another equally effective DMD as soon as possible.

Sue

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Hi Sue
I apologize for jumping in on the other poster, I’m new to the site not to MS, however my RRMS has taken a new way of late.

If I can ask you and the original poster. Does everyone have positive reaction to steroid treatment for relapse and what has prompted you in your relapse to seek out the steroid treatment.
I’m truly thinking over the last 3 months that steroid treatment should have been considered. How long are you getting relief from this and how long once you start the steroids is the relapse backing off?

Thankyou both for any answers, and again I apologize for asking a question on another’s post. I will learn the right way if this is not the right method to ask.
Thankyou both.

Hi,
I’m not sure if everyone had a positive reaction to steroids but they benefitted me.

Began to feel the improvement a couple of days into the iv infusion and for a couple of weeks afterward.
I think the hot weather is partly to blame but the symptoms have come back a little, not as bad as they originally were though.

The Neurologist gave it to me while I was in hospital from a relapse, had to have tests for other infections first before I could start.

Hello Coco

I don’t think there’s any need to apologise, sometimes threads go off at a tangent as people want to ask about aspects mentioned in the original post.

Re steroids, there are a few points.

First, their effectiveness is completely unreliable. And can be different each time. So maybe the first time you have steroids for a relapse, they work brilliantly. That doesn’t mean they will the next time, or everytime, or even ever again.

The point of steroids is not to cure a relapse, but to speed up the recovery time.

Then, they work best when you have just started the relapse. So taking them weeks or months in won’t help. (Almost definitely!) I’ve taken steroids on day one of a relapse (after checking I have no UTI - see my comments later). This relapse happened to begin on the day of an MRI so it flashed up bright and clear. The steroids worked almost immediately and I had complete remission. A perfect example of when steroids work brilliantly.

The side effects from steroids aren’t pleasant though. Ever. The metallic taste in your mouth never goes away, no matter how often you’ve taken steroids, each time the foul taste returns. Nibbling extra strong mints helps. A bit. After you’ve finished the steroids there’s a reaction, I’ve often likened it to 10 rounds in a boxing ring with a heavyweight, or being kicked all over by a donkey. The other thing they do is make you edgy, almost ‘speedy’, sleepless, narky, argumentative (there’s a warning on the label about psychosis!). So don’t row with your OH when taking steroids. Especially not if you are carving the sunday dinner!

You must be certain you don’t have an infection before starting steroids. Taking steroids with a virus (even a cold) or infection makes the bugs in your system go bananas. If you take them with a UTI you could go bananas!! I had IV steroids with a streaming cold once (not for a relapse - for hives that made my eyes swell shut!) The cold turned completely horrible. For ages.

In short, steroids (generally a drug called methylprednisolone - aka prednisone in the US) are sometimes miracle workers. More often, they might speed up relapse recovery, but it’s difficult to tell because relapses can take so *#¥€^ long to recover from. They have some nasty side effects.

Personally I’ve always believed that if you catch a relapse early enough, and it’s a relapse that affects either eye sight or motor function, then it’s worth taking steroids. But if you don’t start them in the same week or two as the relapse start date, then don’t try. Or if the relapse is sensory but not major, then I’d leave them alone.

Have a look at Steroids (methylprednisolone) | MS Trust

Sue

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