Hello, I’ve recently been having a lot of tests and the diagnosis has come back as recurring remittent, MS I’m not quite sure how to feel, I haven’t seen a consultant as it’s all contact has been over the phone and letters, they tried me on gabapentin and I had an almost instant reaction and didn’t get on well with it at all so have stoped taking it. I informed the consultant about this but haven’t received any further updates on what I’m supposed to do next. Dose anyone have any advice or suggestions
Write a letter to your neurologist, copy in your GP, with your concerns, state that you want the letter to be kept on your file. Your GP might be able to prescribe an alternative to Gabapentin. You should have been given contact information for an MS Nurse, you could contact them as well.
Hi Emlo, my sympathies to you. As ThersaB says, you should have been provided with the name of an MS Nurse who would be your main contact for all queries etc.
Have you not seen anyone at all?
Hello, no one at all, I’ve contacted the secretary’s this morning and updated them on other symptoms I’ve had and I’m hoping to get a call back today
I hope they did call you back.
Neurology services are very stretched at the moment but I don’t think it’s good to diagnose you by phone/letter and give you so little information and follow up. I find it rather strange that a consultant would diagnose you with MS without giving you a neurological examination. To do that, they have to have you there in person.
And then if you do have relapsing remitting MS, the next step should be to discuss treatment - for the MS itself (not just the symptoms of it).
The MS Society run a helpline that might also be a stopgap if your local services are not helping you. Occasionally there are also information sessions via the MS Society aimed at newly diagnosed people.
I agree with Hank Dogs, I’d be putting your concerns in writing, copying in GP, and asking for contact details of the local MS nurses.
Just wondering if you got a call back?
I’m also wondering - are you UK based and if so have you looked at the NICE guidelines on MS - they paint a perhaps rosy picture of what the NHS is supposed to do and provide for people with MS
I haven’t received a phone call, I was hoping I would of by now.
I will call back tomorrow and see if there is any update, I just feel bad ringing them as i can imagine they are really busy.
I did try and call the MS help line and spoke with a really lovely advisor that gave me information of local services so I think I’ll try them also.
But yes I am UK based, I will try the letter route to, thankyou all for you advice