Neuro 80% but wont diagnose until 2nd relapse

Hi all… I had my 1st relapse end of june 2016 whilst at work…

my feet started to go numb and after 4-5 days my whole

body was numb, i went to see my GP and he advised i go

to A&E asap… I had to stay in hospital 3 days in all, i had

a brain mri and a full body mri then a LP…

My results show- A cluster of white fog on my brain

A few on my spinal cord and a positive LP!.

I had 3 contrast mri’s today and waiting on results. My

neuro said he wont diagnose me till ive had another relapse.

Has anyone else had a similar experiance?

Thanks

Sean.

hi sean

oh blood, sand and spit.

why oh why do we need another relapse?

each relapse increases disability.

i really hope that the mri’s with contrast lead to a diagnosis and the chance to get on a DMD which cuts the chance of further relapses by up to 70%.

good luck

carole x

Thank you for the reply carole,

I really hope so too, ive managed to see my local neuro on dec 12th

so hopefully he can push Dr Harley in hull to give me the meds i need

as my local one can not authorise them kind of meds.

so fingers crossed we all eventually get answers soon.

right then, we need to all send psyche messages to dr harley willing him to get you on a dmd asap.

c x

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Hello,

My understanding is that it should be possible to diagnose you from one clinical episode if your MRI with contrast shows proof of dissemination in space(lesions in multiple places) and dissemination in time (simultaneously enhanced active lesions and dull, old inactive ones on the same MRI). This is how I got my diagnosis. My first MRI showed lesions across my brain (including Dawson’s fingers), on my brain stem and down my spine - with two lesions on my t-spine enhancing with contrast.

However, a straight up diagnosis of RRMS doesn’t get the drugs cabinet fully unlocked. Unless you have a diagnosis of “active” (evidence of two relapses in two years) or “highly active” (evidence of two relapses in one year) RRMS the drugs available are the same as those for CIS (e.g. Copaxone / rebif etc).

I had a second scan 3 months after my first one - and found myself in the odd position of hoping for one little new lesion in a bit of my brain I didn’t use. And that’s exactly what I got. One small new lesions, and no new symptoms. We went out for dinner to celebrate! Good news was that my toes were back to normal and the MRI showed evidence that some of the existing lesions were fixing themselves. Best news was that my neuro was prepared to use this as evidence of a second relapse and diagnosed me as active RRMS. I received Lem 6 weeks later. I’m now 3 months post and am feeling well and strong.

My advice would be to make sure you are familiar with the updated Macdonald criteria for the diagnosis of MS, and ask your neuro to talk you through your Contrast MRI results and clinical history against this back drop. If you get a diagnosis of active RRMS and want Lem rather than one of the injectibles or tablets it’s also worth being clear from the out set that you understand the risks - and have weighed them against the benefits. Some neuros are a bit slow at offering Lem as a first line DMD where current symptoms are mild.

Good luck. I completely understand the frustration and feeling of vulnerability knowing you most likely have the disease and not being able to crack on with treatment brings so please feel free to pm me.

Kat

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To add to Katy’s comment I recommend you familiarise yourself with the 2015 ABN Guidelines here http://pn.bmj.com/content/early/2015/06/20/practneurol-2015-001139.full

Particularly this part which is were you are at the moment:

Clinically isolated syndrome

“Various disease-modifying treatments can delay the diagnosis of MS in patients with a clinically isolated syndrome,25–29 though there is less secure evidence for their evidence of long-term benefit.30 ,31 Neurologists may consider advising treatment, after discussion with the patient concerning the risks and benefits, for individuals within 12 months of a significant clinically isolated syndrome, if MRI evidence establishes a diagnosis of MS (2010 McDonald criteria [22]) or predicts a high likelihood of recurrent episodes (ie, development of MS), and perhaps particularly if cerebrospinal fluid examination shows central nervous system-restricted oligoclonal immunoglobulin bands. Currently, only the β-interferons and glatiramer are licensed for clinically isolated syndrome.” ABN 2015

I was in your shoes a few years back. It was a horrible and scary time for me. I had a contrast scan 3 months later which showed no change yet I wanted to start treatment as in my heart I knew I had MS. Neuro at the time said I had about an 80% chance of developing MS.

I did successfully obtained Rebif for my CIS. This was not an easy process and took 12 months, I changed teams and became proficient in self advocacy and policy reading.

After a year on Rebif I asked for another MRI, My health had been stable but Lemtrada had just come on the market and I wanted to see if I was eligible. It was a good call as I had one new lesion, not symptomatic but enough to prove I’d had breakthrough disease while on Rebif. This gave me my formal diagnosis and I swapped to Lemtrada with little resistance. I’m glad I was proactive from day one as in a way I feel my strategic planning bought my brain some extra time. If I’d not pushed for Rebif I doubt I would have found it so easy to get the go ahead for Lemtrada. If I’d not asked for another MRI I’d still be on Rebif. If I’d done nothing at all I’ll possibly still be undiagnosed.

Good Luck.