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Update- been to neurologist

I saw my neurologist who confirmed my LP was positive and he showed me the lesions on my brain MRI. I had taken a list of historical symptoms with me and he thought thst a period of being unbalanced may have been a previous attack. He didn’t diagnose me but has referred me to the specialist MS team in my area to discuss treatment options. He may have alluded to this being CIS but I only know that term from googling etc He gave me Methylprednisolone to try and treat my trigeminal neuralgia. I’m basically well on my way to an MS diagnosis but he was noncommittal which I understand as I’ve only had one recorded attack. I don’t really know how to feel. Relieved that things are moving but frustrated at still being in limbo. I know it takes years for people to be diagnosed and mine is less than a year so far.

Hello Betsy

That sounds to me like he actually could have diagnosed MS on the basis of at least two relapses (dissemination in time) and lesions in more than one location (dissemination in space).

I suppose they want a second relapse to be ‘clinically significant’ and observed / noted in official records (pernickety).

At least he’s given you the steroids for your TN and you’ll get a DMD to hopefully avoid further attacks.

With regard to the Methylprednosolone, it can be a bit of a rough ride. They often tend to work on shortening relapses, although a) the effects aren’t always guaranteed - sometimes they don’t work, and b) they cannot cure the symptoms of a relapse, only hasten the course of it.

What I’ve found is that (for me at least) the best way to take oral steroids is:

  • Get some Omeprazole from your GP to protect your stomach
  • Take the pills in the morning with milk (the taste is foul), drink probiotic stuff and eat yogurt, they all help.
  • Lay in some Gaviscon in case you have stomach or oesophagus effects.
  • Try nibbling on extra strong mints to take the metallic taste away.
  • Expect some insomnia. Don’t therefore expect your brain to be at its very best.
  • After the course is finished, anticipate some achiness. It makes me feel like I’ve been kicked all over.

With regard to the DMDs, I’m not absolutely sure whether the drugs detailed in here for CIS are all you might be offered, but it’s definitely worth having a look: https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

And Betsy, don’t expect to just take in the fact that you have at the very least CIS, and mostly likely that will at some point change to MS (sorry, but I suspect it’s inevitable). Allow yourself some time to get accustomed to the idea. Don’t feel you have to just ‘accept’ your diagnosis and get over it. Give yourself time and space to get used to it. Use us to wail, complain, shout and scream to. We won’t mind, it’s sometimes necessary to shout ‘it’s not fair!’ Because it’s really not.

Sue

Thank you Sue. I agree he could have diagnosed. The unbalanced period was recorded by my GP as inner ear infection but I remember having no other symptoms of infection. I’ve had prednisone a load of times for asthma and eczema so I know how that affects me but I guess this will be more pronounced. Thanks for the tips. I’ll refer back to them when I manage to get hold of the drugs. My main worry is other people worrying. I feel intense guilt that I’m causing my family and friends to worry about me. It’s horrible! I’ll be back here, I have no doubt.

Update: I was diagnosed with MS in July on the basis of the evidence I wrote above, it just had to come from a specialist MS neurologist. I am having another MRI with contrast this time to work out what type of MS (benign or RRMS) the neurologist thinks RRMS and then he will start me on Ocrevus. I don’t have an MS nurse yet, and wondered about some symptoms I got yesterday. I had pins and needles everywhere and much worse than usual, my face felt on fire and I couldn’t get out of bed until after 12. I understand that a relapse must last over 24 hours, so I’m assuming this was just a bad morning. Would people advise me to report this to anyone or just tell the neurologist next time I see him? thanks

It definitely sounds like RR to me (amateur view). I have no idea why a neurologist would diagnose ‘benign’ MS. It gains you nothing, and means you don’t qualify for DMDs. It’s a meaningless term (imo).

Hopefully you will get Ocrevus. It looks like an excellent drug with really good relapse reduction rates.

With regard to small symptoms that don’t hang about, start keeping a diary, you can write your various symptoms in there and refer back to it if you get the same again. If you have a smart phone or a tablet type computer, you can get a diary app. I’ve been keeping my diary for about 8 years now and it’s invaluable.

Sue