HELP! -Confused about my diagnosis

Everyday living
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*NB: Apologies in advance if I waffle too long in this post(!) but my brain gets easily muddled and it takes me a while to make sense, but I’ll try

So my first problems began in 2010 after I had a HepB injection following being bitten by a student (I used to work with young adults with challenging conditions: severe autism, CHARGE, etc) and within just a couple of days I started feeling ‘odd’: dizziness, vertigo, disorientated etc and 3 weeks later I collapsed and became paralysed all down the right side of my body. I was taken to hospital and initially they thought I’d had a stroke, but on further tests realised that wasn’t the case. MRI’s revealed inflammation and lesions and over the next weeks and lots of visits from neurologists it was concluded to be demyelination (not sure if that’s spelt right!), they said it was most likely ‘ADEM’ or CNS inflammation, or possibly the onset of MS.

I did have a couple more episodes in 2012 (which was probably my first relapse) but MRI’s revealed no changes so no worries and other than still having permanent dizziness I slowly recovered and got almost back to normal. I started at a gym last year and was really getting fully on top again and feeling fit and strong when in mid-June I woke up with pins & needles in my feet, and by lunchtime was numb from the waist down. Hospital referred me back to neurology and further MRI’s revealed several more lesions on the brain AND now lesions on my spine too. I was diagnosed with RRMS and my neurologist (who is great, by the way) said i need one more relapse in the space of 2 years to qualify for trearment, and that he will be closely monitoring me over this time.

After that relapse I seemed to recover quite well, with feeling come back to my limbs and dizziness easing but then in September I suddenly started getting the numbing and pins & needles happening again and on almost a daily basis (the best way that i can describe it is it feels like I’m wearing concrete tights!), relentless lower back pain, I’m getting the ‘headband’ thing at least 3 times a week and this last month my right hand and arm is getting the pins & needles every day too. :confused:

My confusion is this: if it was a relapse last June, is it normal to have a break in symptoms for a couple of months and then new ones happening and staying for such a long time? Its nearly a year now and my mobility is deteriorating not improving!

I’m starting to wonder whether this is even MS at all or if it’s something else and I’ve been misdiagnosed, because everything I’ve read and been told about relapses has implied that they only last for a couple of months, not almost a year.

Has anyone else’s lasted this long?

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Hello Lilac

Yes. Anything is normal. MS is different for everyone. Which is why it can be so bloody difficult to diagnose.

MS relapses can take absolutely months for symptoms to remit. And it’s quite possible to take up to a year to get free of one lot of symptoms, a few weeks go by and another one starts. Sometimes, you only realise that you feel a bit better almost by accident, you just think about how a month before you couldn’t feel your toes and what seems like all of a sudden you can.

What you need to do is make sure all of this is recorded by your neurologist as relapses.

Its a flipping pain, that it’s obviously MS, clearly it’s relapsing remitting (symptoms don’t always entirely remit fully), but to qualify for the full range of DMDs you need 2 relapses which have been clinically observed (which means the neuro has records of them) within 2 years. To be honest, many neuros would have already accepted that you’ve had this and put you on a DMD before now.

And by the way, I haven’t been able to feel my toes since 1997. But I was still classed as RR until the last couple of years at the earliest.

Get onto your neuro and start asking for DMDs. If you can stop as many relapses as possible then you’ll keep potential disability at bay.

Sue

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I remember this theory https://www.cdc.gov/vaccinesafety/concerns/history/hepb-faqs.html and from my own experience (a bad reaction to a Smallpox Vaccination) feel this is one of many ways to start your MS.

But thousands have these vaccinations but don’t get MS. Still why worry about how you got it? Myelin regrowth using Stem Cells looks very promising Search - NHS

I can only speak about myself and have only had one attack some 46 years ago. Not noticeable; well not to me; I have very slowly deteriorated. Whether this is age or MS I have no idea; I’ve never been this old before!

Don’t forget to buy a copy of your MRI; about £10 but worth it for comparison purposes if they lose their copy.

George

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Thanx for replying Sue - yes that is what my neuro told me: he is doing scans every 6 months because he said if any new lesions appear then that could be classed as a relapse, regardless of whether I had new symptoms or not.

I’m not sure how I feel about taking DMDs -I’m not a big pharmaceutical fan! - I s’pose i just want to know if its normal or not, it just seems to be dragging on forever. :confused:

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Join Vitamin D Protocol North America - brilliant fb group - they will help you so much. This is where l first learnt about MS being brought on by Hepatitis vaccine. Lots of knowledgeable people on there to help you.

Get a copy of your MRI - as people on the protocol do post before and after mri scans.

l have had ms for 35yrs - but even after all this time - l am feeling much stronger. The group is for all with auto-immune diseases. So all the arthritis’s - Parkinsons - Crohns - Coeliac- Cancer - MS - ME - etc.

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Thanx George, I agree - I don’t worry about how I got it, I worry more that it might be something else! But hearing that its normal takes me worry less :slight_smile:

I didn’t know that (about getting a copy), I’ll ask next time I go.

~Soo

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Thankyou Spacejaket, I will!

I’m all for finding natural remedies and ways to cope, I’ve only just recently started taking vitamin D3 so time will tell if it helps, but I’m hopeful :slight_smile:

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Hi, you’ll find that either your natural approach will work, or it won’t. Sometimes drugs are your only choice as you could/may be so ill.i had an awful long relapse that lasted 15 months and n the end a radical natural approach stopped it. Stay aware of your symptoms, but see if you can live with them.

I had to change drugs last year and hated the idea and hated the new drug, but we are okay now. I thought I had progressed, as I had terrible incontinence, but the culprit was a diuretic. Triggers are so varied. Who knows what yours was? In 10 years you may know more…or not…that’s life with this disease.

the new treatments are so much better now. We get monitored! Wow! About time.

i hope you find some peace with ms. It throws up all sorts of difficulties and keeps you alert. Better than sleepwalking through life.

Best wishes

xxx

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Thankyou COSGalto, I will always go for the natural approach first, but having said that I also go with the ‘Never Say Never’ school of thought so if natural doesn’t work I will still be open to what’s left :slight_smile:

I think I’m mostly just trying to get used to it all… Still, I’m sure learning to live with it will kept me on my toes!

/(",)\

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Reading between the lines, it does sound to me as though your neurologist’s view on you and DMDs is ‘the sooner the better’. That’s what my neurologist though too, and, looking back from 17+ years down the line and being as well as I am now despite aggressive RRMS, I am very glad. Please do not turn your face against DMDs (if you do turn out to qualify) without careful thought. At least one has a choice when it comes to taking DMDs or not. MS offers no choice at all, and it is a brutal enemy.

Alison

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Yes I got that impression too Alison, about my neurologist I mean. But please don’t get me wrong, I am not against DMDs (i don’t know nearly enough to be of such an opinion). I simply meant that I’ve just never been keen on medication in general for my own reasons… I will certainly be doing a LOT of research before embarking on any treatments.

~Soo xx

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Being a tad cynical, the more research you do on the various DMD’s the more confused you’ll become!

Most posters on this site say the sooner you start taking a DMD the better although I wouldn’t touch them with a bargepole.

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Ha! Yes I imagine that’s true krakowian! Though to be fair I don’t know a lot about them, just all I have heard/read so far seems to be endless negativity about side effects, and THAT is what makes me wary.

Why would YOU not go near?

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I understand the side effects of DMD’s might be unpleasant, but MS left unchecked can be utterly devastating and you can’t correct damage already done. The Barts Blog is very good at explaining the likely consequences of remaining drug free and worth reading the reliable information.

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Oh, thanx whammel, I’ll go and check that out now! :slight_smile:

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hi - has anyone suggested checking out https://overcomingms.org/

It may be the approach to suit you :slight_smile:

good luck x

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Hi Vanessa no they haven’t. Thankyou for your message (have replied) and thanx for the link - I’ve just filled in the form and requested the book! Woohoo!

~Soo

/(",)\

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I think I’m the poster child for why you should take DMDs.

I’ve been unlucky in that I’ve had bad side effects from 3 of the 4 DMDs I’ve been on. The one that didn’t give me side effects, Copaxone, stopped working after about 5 years.

The side effects I’ve had have often been quite unusual, so: cognitive problems with Avonex, elevated liver enzymes (aka drug related hepatitis) with Tysabri, and depleted Lymphocytes with Tecfidera (not so unusual that one).

Now you could argue that side effects such as I’ve experienced are a good reason to stay off them. But I completely disagree. I’ve now had MS for 20 years. I’ve been on a DMD for only 5 years in that time.

I am very disabled. I can’t walk beyond a few steps with the aid of FES and a walker. So 98% of the time I use a wheelchair inside and out. I have weak legs, impaired proprioception, and bad spasms. My feeling below the waist is dreadful. This impacts not only bowels/bladder/legs but also any possible sexual feeling. I can’t write anymore because my hands don’t work properly, this is also the reason why I often eat like a chimp (coordinating left and right), I can’t cook, and I always loved to cook. I type with my two thumbs because my right hand wants to form a ‘claw’. My hands actually hurt quite a lot of the time. My bowels and bladder don’t work, so I now have an SPC and am probably going to be getting a colostomy over the next few months. My brain fog has impaired my cognitive abilities so not only do I forget everything, I lose track of conversations, even my own thoughts. I also suffer pretty terrible fatigue.

I might have become this disabled regardless of being on a DMD. But somehow I doubt it. I suspect that if I’d been able to take a decent DMD right from diagnosis to now, I’d be a lot less disabled. My MS seems now to be progressive, but that has been for only the last year or so. It was only when I ran out of DMD options that my neuro has decided to call it progressive.

And I wouldn’t be prepared to take the risk of becoming this disabled by refusing DMDs.

I also think that many (even most) people with PPMS are rather envious of the DMDs that people with RR are able to take. They have no choice but to live with disease progression, and it’s pal, disability progression.

This is my experience only, it has led me to my own perspective. Everyone needs to weigh up their options and do a cost/benefit analysis (i.e. potential benefits versus possible side effects). And many people have been able to maintain health and fitness without DMDs. Often they ascribe this to their diet or following one regime or another. Again, proof of what works or doesn’t is impossible to measure.

I hope you find your own route through the conundrum that is the decision as to whether to take a DMD and if so, which one. And of course, I hope you stay as fit as possible.

Sue

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Best book to get is Ana Claudia Domene’s Multiple Sclerosis and lots of Vitamin D. Look on amazon - you can get the book or download the kindle version. lt is brilliant.

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Thanx Sue, yes I think that’s the main worry of my own neurologist, that my ms appears to be somewhat aggressive from the onset of this relapse: my legs in particular have been majorly affected with numbing and weakness, resulting in me being also unable to walk more than just a few steps and needing a wheelchair when out of the house.

As I previously said, I m not completely opposed to DMD’s I’m just (for my own personal reasons) a bit nervous of medication in general…so im wary and will need to know a LOT of information before agreeing to take any if and when its offered.

Xxxxxx