Hi everyone. I have never really been here before so dont know what to expect. I was diagnosed with MS in 2019 during covid. Since diagnosis i feel i have been neglected by medical staff. Im atill waiting to be put on medication but its always next time we see you we will organise medicating you. Since Apr ive had 3 relapses. Im on my third one now & i feel awful. I just want to lie down & cry. I dont understand why this keeps happening. I have a 5 year old & my husband works away mon-,fri every week. My wee girl worries when i relapse that im going to die so i use so much energy trying to be “normal” when really i feel like death. I feel so lonely with this illness & feel like theres no support. I have to use aids to walk & been told next step is a wheelchair. Ive just turned 40. Sorry im kind of just off loading cause have no where else to do that & i feel like no-one understands how unwell i feel right now
Hi Emz
I’m so sorry you’re having such a hard time without any support. Covid has knocked things for six, but you need to call your MS nurses and demand to be seen. You need steroids to help speed up recover from the relapse, and then get started with a DMD. If you don’t have any joy getting to speak to one of the nurses, you could try speaking to your GP and ask them to follow up with the hospital.
I’d also see if there’s a local MS Society branch that meets in your area, or an MS Therapy Centre. Speaking to others who understand what you’re going through can really help, to know you’re not alone.
And, of course, come on here as much as you need to, whther it’s to ask questions or just offload how you feel
Dan
That sounds really tough and it’s no wonder you’re feeling low and unsupported. I would share your concern that you need to start DMD treatment as soon as you can, and maybe it’s time to start making a polite fuss about that? I am sorry that it all feels like such an uphill battle.
Hi Dan
Thank you so much. Ill phone my MS nurse on mon again & hopefully ill have better luck. I’ve been waiting 2 years to be put on medication & they keep saying well put you on them next time we see you after I’ve spoken to the consultant then next time its the same thing so i just gave up. I’ve moved health boards so I’m hoping i have better luck but it took my old consultant 8 months to refer me & i still have to wait a few more months to be seen by new consultant. Its a joke. I have kind of had the fight kicked out of me just now but ill get it back again.
Thank you again
Emma x
Honestly alison its been such an uphill battle & its soul destroying x