enfys 27/03/18
Last reply 1 month 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
3 months 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
3 months 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
3 months 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
3 months 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 months 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 months 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 months ago

@dmt727 , any joy with PALS?


dmt727
3 months 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
2 months 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
2 months 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
2 months 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.


enfys
2 months ago

Hi @stumbler, thanks for the information, DMTs were not mentioned by the consultant, just vitamin D, getting some more sleep (not easy with a baby!) and generally trying to keep well.

I will see how the follow up MRI goes in October and mention them then.

@dmt727 – we have the same diagnosis – I’m sorry to hear of your news, I was hoping for a more positive outcome for you, both on the diagnosis and the time scale until your next appointment. I hope the appointment goes well and that you don’t have any active symptoms at the moment and are feeling well.


dmt727
2 months ago

Hey,
Thanks, I still have pins & needles in my hands and feet and numbness on my left side of my face but otherwise reasonably well.Trouble is sometimes I think it has gone and then boom !! It’s there but I try to distract from it, if that makes sense?
Hope your ok? How does your other half deal with it?


enfys
1 month ago

Hi @dmt727 – apologies for the delay – I’ve been really poorly unfortunately with terrible sickness and vertigo 🙁 I’m better now though fortunately. I’m seeing the neurologist in a couple of weeks to discuss wether could have been a relapse despite them telling me in hospital that it was most likely labyrynthitis. It cleared up as quickly as it struck so I’m hoping it was ‘just’ a viral infection.

How is your numbness and pins and needles? The sensations are odd aren’t they, and looking back I’ve had them for years but it never occurred to me that it could be something like MS!
I’ve heard that massaging the area helps and I have been trying that and I think it helps even if it’s a distraction technique if you see what I mean?

Is your NHS appointment coming up soon or is is late June? You may have tried this already but it may be worth asking your GP if they can contact them to see if they could see you sooner in light of your ongoing symptoms, it seems like such a long time to wait. Poor you. I hope you are coping well with the waiting, it’s a difficult place to be.


dmt727
1 month ago

Hi enfys,
Great to hear from you but sorry you have been unwell 😕 yeah I still have pins and needles in my hands and feet, thinking back too i have had it in my feet for some time but my hands is reasonably new. I do have other symptoms such as blurry vision from time to time and I have had a couple of stumbles! Luckily my daughter broke my fall the other day otherwise I would have face planted the road 😩(don’t worry she is 17 and bigger than me) sadly i haven’t told my children about any of what’s going on? They think I’m just clumsy 😉 also sometimes I struggle to get my words out in the right order. Kids just laugh, which is hard.
My appointment is June 5th so not long now. I just need to know what is happening.
Thanks for the advice about massaging the area, I will give it a go
Look after yourself 💕

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