Last reply 8 months ago
Update

Hi All

Not been around for a while as I just got too frustrated 🙁 sorry.
I thought I should be on the DMT as I followed the guidelines on here and NICE but my consultant wasn’t doing it, said my last MRI didn’t show what he needed etc.., so was very frustrated and didn’t know where to go next.
I then went through Best Doctors through work and they reviewed everything, took a while but got there and an expert reviewed and came back and said I wasn’t in a 3rd world country so I should be on the DMT.
My local doctor was very supportive but couldn’t see what to do he thought it was all to do with funding. So he wrote a letter to my consultant in Jan / Feb, it took till last week to actually get a response to which I meet with my consultant again, I was relapsing (sensory) again, which I also said I wasn’t speaking to the nurses as I had little or no response from them or they always said nothing to do with the MS and ended up wasting my local Dr’s time and it was so I have no faith in the nurses.
The result of the meeting last week is I am on steroids again, he is now booking me in for another MRI (6-8 weeks booking time) then he will look at which DMT I go onto.
So in a way it was quite positive I was relapsing when I saw him, as it gave him an out to get me on a plan 🙂
Sorry for the long note I’m just tired and steroids aren’t working as well as before but I am sure it will be fine after I finish this week.
Just thought I would do an update.
Thanks all for listerning
Shona

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stumbler
8 months ago

@shona12 , there’s no requirement to regularly be on this forum. It’s here when you need it.

I can really understand your frustration. Your Neuro seems to be playing God and is not following the guidelines. This strikes me as something between professional incompetence and wilful negligence. Was seeking a second opinion never suggested to you?

But, the situation is as it is and you need to move forward in the best way possible for you. It sounds like you’re now moving forwards to a treatment option, albeit in the fullness of time as is the want of the NHS.

Do read up on DMTs, so that you can be an active participant in any discussion regarding options. You want to be able to agree on the choice of DMT, not be told what you’re having. Here is a good place to start :-

https://support.mstrust.org.uk/file/store-pdfs/MS-Decisions-ALL.pdf

You also need to try and clear the air with your MS Nurse. That’s if these are MS Nurses or just general Neuro-nurses. There is a difference. You can look up the MS Nurse for your area here :-

https://www.mstrust.org.uk/understanding-ms/living-ms/map-ms-services

An MS Nurse only deals with MS patients and can be more clued up than the Neuro.

As for your recent Steroids, they’re not meant to be an instant fix. They work with your body over the following 6 – 8 weeks to help you recover. But, it does need you to allow your body to recover, so rest up a bit.

Let’s hope that this unsatisfactory situation is now on course to be rectified.


shona12
8 months ago

Thanks @stumbler
the second opinion was not suggested by a professional it was when I was speaking to normal people and reading items here.
I think the MS Nurses are specific but I am not honestly sure, I have to call them and tell them I have taken the Steroids and once I have my MRI so it goes back to my consultant.
I will look them up but it’s who the consultant had in my first NHS consultation.

Yes I am just hoping they will help, and last time they worked quicker so my be I had rose tinted glasses then 🙂

I am just spaced and vibrating currently, but think that’s sleep related mostly as sleep never comes easy to me!

Thanks again all for listening I need to get my butt in gear

cross fingers for the future but I am know I am not bad compared to others 🙂
cheers
Shona

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