enfys 27/03/18
Last reply 1 day ago
Newbie

Hi, I’m a newbie and have found myself drawn to this site as I await confirmation of an MS diagnosis. I’ve unfortunately recently suffered from double vision and difficulty walking; inflammation and lesions were found on my brain scan and they have advised me this is highly suggestive of MS but there are further tests required before a formal diagnosis can be reached. I feel a little in limbo as I gather the diagnosis could take a while. I was wondering if anyone was else was in a similar position?

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stumbler
4 weeks ago

Hi @enfys and welcome.

“Limboland” is a very trying time. You know that something is wrong and the sooner it can be identified, the sooner you can deal with it.

Do try and keep your stress levels down though, as this can make things a lot worse.


dmt727
4 weeks ago

Hello @enfys,
Welcome and yes I to are in limbo land so know how you feel 😔
It’s frustrating to say the least but I guess we just have to keep our chin up!
I have had all the tests so just waiting for Consultant to piece it all together.
My NHS appointment has been cancelled so have decided to go private.
My appointment is in 2 weeks time so hopefully may be able to start to make sense of it all?
Stay positive 🤞


edgarleroy
4 weeks ago

Sounds like MS. You have some schooling to do. You may start here: http://www.msbrainhealth.org/resources/for-people-with-ms/article/brain-health-a-guide-for-people-with-ms

Here are videos from a good MS neuro on many MS topics:
https://www.youtube.com/channel/UCkQopiiFbAo0zS_9BmRF3Bg/videos


vixen
4 weeks ago

Hello there @enfys, regardless of your diagnosis, everyone on Shift will understand the process you are going though. Try your hardest not to spend too much time googling. It won’t affect the outcome and will add to your stress levels. And @dmt727 good call to go private and speed things up. Shame that we have to do it, but hey ho. Let us know how things are going for you x


enfys
3 weeks ago

Hi everyone, thanks for taking the time to respond.

I’m sorry to hear of your cancelled appointment @dmt727 that sounds very frustrating. I have my second MRI booked for a couple of weeks time but how long I will need to wait to see the neurologist again to discuss the results I don’t know. I found things moved very quickly when I was in hospital but how it will go now I’m home remains to be seen. It’d be great to keep in touch if you like, we can be appointment buddies!

Thanks for the links @edgarleroy, I will take a look.

Thanks for the advice not to spend too much time googling @vixen. It’s hard not too isn’t it! There’s definitely a fine line between informing myself constructively and stressing myself out!


dmt727
3 weeks ago

Hi, @enfys
That sounds good to me! Yes extremely frustrating!!They cancelled it with no reason given and still have yet to book me another one? I rang them and was put through to 3 different people who had no answers except to sit and wait😡😡😡😡😡

I shall keep you updated.Dr Google always seems to be a good idea when doing it but I think just makes you more confused 🤷‍♀️


stumbler
3 weeks ago

@dmt727 , any joy with PALS?


dmt727
3 weeks ago

To be honest with you I haven’t spoken with them yet!
I have had a busy week with work and have managed to put it to the back of my mind.But I will contact them tomorrow when I can give it 100%.
I will keep you posted.


enfys
1 day ago

Hi @dmt727 how are you getting on? Sorry for the delay in replying we have not had any broadband at home for over 3 weeks and its amazing how reliant I am on it!

I had my appointment with the neurologist last week and she has diagnosed Clinically Isolated Syndrome with an estimated 50% chance of developing MS in the next 5 years. I am being reviewed in 6 months.

I hope you have managed to get your appointments sorted and the outcome is positive for you.


stumbler
1 day ago

@enfys , given your diagnosis of Clinically Isolated Syndrome (CIS) and prognosis, was the possibility of starting a Disease Modifying Therapy (DMT) discussed?

The latest thinking is to start treatment now, to try and avoid transitioning to MS.

You may want to look for previous posts regarding CIS, to find further details.


dmt727
1 day ago

Hi @enfys,
Finally I got to see a Private Neuro! He has given me a diagnosis of CIS with a much higher chance of having more episodes? I had a MRI which showed a large number of demyelinating lesions and positive Oligoclonal bands. He said it is not possible to say what type Ms I might go on to have? But at the moment I was not eligible for DMT’s?
Really not sure where we go from here? I do however have a NHS app in June so again we play the waiting game!

@stumbler thanks for the info above. I to will take a look.

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