Long first post, sorry

Hello, I was diagnosed in March 2021, was just told it was ms, given some tablets and told that an appointment would be sent for me to see ms ‘specialist’. This is confused bit, was it rrms or one of the other 4 letter types? 3 months later I saw ‘specialist’, this is where I became very frustrated. She wasn’t a specialist, just had an interest in ms: didn’t listen to me when I tried to explain what was happening to me, wanted to ask so many questions but she was totally uninterested. All she offered me was to see physio, to help me with my confidence in using my walking stick! Every time I tried to talk to her about different drugs or therapies I was ignored, infact at one stage she told me that the hospital treat thousands of people with ms evey year. I was just one of them.
That’s not what I want or need. Just someone to listen, help and advise, is it too much to ask. You all know how scary this creature called ms is, without being made to feel beneath their notice. I’ve suffered that enough times in shops!
So now looking for another consultant, this time in Leicester. Here’s hoping I find one willing to listen.
Sorry about the rant and long post, if you’ve read this far, Thank-you and bless you!

Omg Elle, that doctor should be struck off. How rude, unprofessional and uncaring. Yes, there are lots of people with MS. That doesn’t mean each individual should be left to get on with their diagnosis alone.

You definitely need a new doctor. I really hope someone can recommend a great MS specialist neurologist for you locally. Sorry I can’t - nowhere near to you!

Most people diagnosed with MS have the relapsing remitting variety (about 85%) see Types of MS | MS Trust for more information.

Given that demographic, you should be a) given contact details for an MS nurse, who will be able to b) advise you with regard to disease modifying drugs (DMDs). Again have a look at MS Decisions aid | MS Trust This webpage will give you information about the various drugs to reduce the number and severity of relapses.

Best of luck Elle, do keep posting on here. You are most welcome to the forum and if we can be of use to you with regard to knowledge and experience please ask for help.

Sue

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Elle,

Sorry that you are being “looked after” by such a poor medical professional. Sadly there are many and I think some are ground down by the system and some are just unfeeling people. What would they want if the roles were reversed? I have had some naff ‘specialists’ but I did find the majority of MS nurses were empathetic and tried to help, even if this was just by listening. I do not have much in the way of soft skills but I am not employed in medical support services, I would like to think that empathy and thoughtfulness would be as valuable as technical skills. Do not apologise for a rant here, it is a good place to let off steam. I really hope that you find some pleasant professionals to provide quality support.
Mick

I just remembered, I meant to say that you should probably talk to your GP about your lousy appointment Elle. It may be that s/he can refer you elsewhere!

Sue