Last reply 2 weeks ago
A little lost !

Hi well finally after 12 months finally have some answers I think. Feeling a little lost
after a 2 week delay with the equipmemt (CT scanner)well finally had lumbar puncture last Wednesday something i feel would should have happened 12 months ago and saw specialist friday for results. He said there is mild infection in the results .But what makes it unusal there are unexplained symptoms but no changes in the 5 or 6 mri’s in the last 12 months. Then mentioned that MS symptoms are different for everyone. Now he made a decision to start treatment ocrevus in January. But nothing was said that yes i Ms or do i guess or read between the lines yes i have it.
Tell me do the specialist ever tell you yes you have MS straight up or do they assume because you have been seeing then for a possible diagnosis of MS, that when they get the information for them to make that 100% call they assume you know that is what it is. Sorry trying to make sense of all this.

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edmontonalberta
3 weeks ago

@gypsyrose

Same post twice – I hope the Moderators delete the other post…

Ocrevus means they believe MS & want to do something they suspect will work – good news for you… Please keep us updated.


stumbler
3 weeks ago

@gypsyrose , there are specific criteria that have to be fulfilled to allow for a diagnosis of MS (https://www.mstrust.org.uk/a-z/mcdonald-criteria).

The best person to answer your question is the specialist. Perhaps he’s hedging his bets. He maybe expecting a diagnosis of MS, so he is preempting this by treating you now……..

PS Duplicate post removed – admin (stumbler)


merfield
3 weeks ago

@gipsyrose, it took 2 years from when I first had symptoms and saw my gp until I finally had the various tests and was told it was ms- I had suspected as much so it wasn’t a shock. Neurological conditions are notoriously difficult to pinpoint so try and bear with. Looks like it possibly is ms but you’re in good company on here with the best support possible 😉xx


gypsyrose
3 weeks ago

Thanks @stumbler for your reply and deleting my second post.😊


gypsyrose
3 weeks ago

@edmontonalberta thanks for the reply, i hope it helps will keep all updated.


grandma
3 weeks ago

@gypsyrose when I was dxd 25 years ago was told straight away. In fact the consultants words were “you know what I’m going to say” me “haven’t a clue” cos I didn’t in those days. I had had a major relapse on the train to work in the next county. They arranged an MRI in the next county to them! We didn’t have one anywhere near us. Move forward a year was put on a trial for Avonex (the first DMT) and had a monthly MRI. Very snotty staff who obviously didn’t like me being there. I found out why several years later, it turns out the drug company paid for the first MRI machine in our city if their trial members could be scanned once a month. But the staff weren’t told who had paid for the machine. So their comments every month on reading my card “oh youre one if them are you” was finally explained several years later! But I assume I was told so blandly because there was no doubt about the diagnosis, I’d gone blind, lost all speech, all control of anything, bladder & bowels included, so because we’re all so different, have such varying symptoms, and these days dxd is much more complicated because it happens when people are so young. As I’m sure you know we’re born with ms, and in my day what would have been put down as a clumsy child, always dropping things, in fact I was kicked out of my Art Class as an 11 yr old in my first year of grammar school because I couldn’t even hold a pencil that day and the Art teacher though I was just being a little sh.te. Being sent to the heads office was very scary. I was also quite an athlete, but couldn’t understand why one day I would picked for the netball team and the next couldn’t catch the ball. Luckily it didn’t affect my legs again for 25 years. I used to run and got into marathons when I was older. But my last one was done for someone else, I took a blind runner round the marathon course, not knowing it would be my last as the ms hit big time 6mths later. So it’s easy to see while you can’t make sense of it all. What would have just been put down as a passing problem with your gp is now far more likely to be investigated by the neurology department and there are criteria for ms diagnosis including lumbar puntures, mri’s and other tests. So keep your chin up, at least you’re getting a DMT straight away. Try and make sense if it all later and be grateful that the new year hopefully will bring some help.✌🏼👏😍


gypsyrose
3 weeks ago

Hi @merfield i get that it takes time to get the diagnosis right but it was frustrating that it took a year to get the LP done.😤 But now its done we have a better picture of what is going on.


gypsyrose
2 weeks ago

Hi @grandma thanks for your thoughts. I will just take it easy and try not to think about it to much. Easier said than done I know, but got to be positive


wilf
2 weeks ago

We’re born with ms?!


grandma
2 weeks ago

@wilf yes, were born with it. A lot of people have it and don’t know (great for them) it takes a ‘major trauma’ to the body to set it off. Pregnancy is a major trauma to the body, even if one sails throughit, hence the 60/40 split with women/men with ms cos men don’t get pregnant! They found this out many years ago when, doing autopsies, they found the scarring on the brain, and discovered that a lot of people has ms and didn’t know it, good for them. So it explains all the little things that happened to us as children, clumsy child always dropping things, fabulous footballer one day, can’t kick the ball the next. Great at drawing but can’t hold the pencil one day etc., That was me down to a tee, was kicked out the art class as 11yrs old at grammar school cos I couldn’t even hold the pencil that day, the teacher thought I was just being a little sh.te and sent me to the headmaster! scary for a very quiet child who wouldn’t say boo to a goose. Was given detention, very scared about telling mum who had been so proud when I had passed the 11 plus and got a place, All this seems so insignificant now, but so many things ‘fell into place’ when I was dxd😍

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