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MS Specialist meeting on Thursday

Im at the RVI on Thursday to see my MS Specialist im kind of praying he puts me out of my agony and confirms my fears.

I was in hospital for 8 days in June having all the tests and steroids, one doc said it was ms another cis but it turns out both these docs were specialits in epilepsy.

Ive had both brain and spinal MRIs done and it showed lesions in both the one doc who said it was cis also called it transverse myelitis. All i know is my body isnt working properly and ive all the symptoms (short term memory loss,numb ,pins and needles which was confined to just my legs but is now in my right arm hand and fingers.

I hope to be one of the lucky few who get diagnosed very quickly as it will only be four months.

I of course dont want it or to be a part of the ms club but in my mind i know i have it and hope he says so just to stop me thinking im crazy.

I hope to be able to give you a yay or nay on Thu.

Best Wishes Iain xx

I wish you the best of luck on Thursday. I really think doctors need to be clear about what they are saying. Getting mixed signals from different doctors is at best frustrating and at worse quite damaging. I think all will become clearer when you get the chance on Thursday to see an ms specialist. Make sure you ask him/her exactly the questions you know you want answered. Let us know how it goes.

No its a strange one. Its almost like there hedging there bets as the one doc said it was transverse myelitis which also has no cure and attacks the neuro system.

He said because i was so fit it took a while to bring me down i knew i was ill but being a man i knew best lol.

A soldier running every day jumping out of planes and now im walking like ive had a skinfull of beer.

As i said i hope they can put my mind at rest and say yes it is as the army have already decided ive got it and are going to medically discharge me on full pension , yes im lucky that way but you cant have a neuro disorder as they say and carry on your duties.

Fingers crossed ill let you know Thursday.

Best Wishes Iain xx

Hi Iain

Without knowing what the neurologist is going to say I can’t tell you what questions to ask.

I think the best thing you can do is take your partner, or a friend, who can take notes; because there may be a lot of information to take in with very little time to absorb it.

Good luck,

Anthony

Thanks Anthony.

Well i was diagnosed with cis in June plus tm had all the tests MRIs both of brain and spine with lesions found in both.

Im wondering if im entitled to a nurse and modifying drugs or are they only open to full blown ms cases .

Everything was lower body below my waiste, but now my left arm has pins and needles running up and down tomy fingers , ive had this now for about 2 weeks.

Being in the Army my medical officer has been seeing me every week as far as hes concerned its ms and hes treating me as though it is, and discharge proceedings have started , cant be kept with a proven neuro problem lol .

Best wishes Iain .

Hi Iain

As far as I’m aware, there are some DMDs available for CIS. They tend to be the older injectable style plus Aubagio. But as you say, it may now be diagnosed as MS. In which case there’s no question, DMDs are available. As to which ones, that will depend on what’s available locally (ie what prescribing centres are set up), your actual disease activity, the neurologists preference, and of course yours.

You should be able to contact an MS nurse for support even if it is still classed as CIS.

It’s only if they decide it is TM that you wouldn’t get DMDs or an MS nurse. But it sounds like more or less everyone thinks it’s MS, perhaps because you have lesion(s) in your brain as well as spine.

In terms of questions to ask, that, as Anthony said, will depend on what direction the neurologist is going in, ie what are they diagnosing at this point.

Certainly if it’s CIS or MS, you’ll want the contact details of the MS nurse. Plus some info on what DMDs are available to you.

Try to take someone with you so you together remember everything that’s said. There’s nothing worse than coming out of an appointment, scratching your head and wondering what just happened.

And while you are fully expecting the MS diagnosis, don’t be surprised if you get that and feel shocked and upset. It can happen even when you’re fully anticipating it. And you’re a big tough soldier!!

Sue

Thanks Sue .

I thought i was big and tough till this happened lol .

Its just proven to me after all the things ive done in 30 years of military life thinking your bullet proof and you cant be hurt, just how fragile the body really is ,one day your fine the next your world implodes .

But this fantastic forum and everyone on it has been a great help, ill update yous all tomorrow how it went.

Best wishes Iain .