Last year I was diagnosed with RRMS. I attended my first annual review with my consultant neurologist and her registrar (training to specialise in MS). I wasn’t sure how to feel initially about my review because I didn’t know what to expect. My appointment went ahead with simple observations and asking how I was. Followed by describing relapses I thought I had and changes. It turns out in-fact I did have a pretty bad relapse between Christmas and early January. The reason I was unsure was because I had no one to turn to for advice other than my GP. My allocated MS nurse had been signed off due to ill health and her replacement was not available. A consultant secretary had more intentions to help me. By this point I was already on third cancelled appointment with consultant. May I add third appointment made was an urgent appointment made by consultant then cancelled 
. I lost all hope for getting any support! Would you believe after a rather lengthy complaint, a very sweet nurse from the clouds I think lol phoned me asking how I was and advised me I will be seeing someone soon about my ms . When I went for my appointment I felt so disappointed because I think my relapse could have been managed better. Now I need an urgent MRI for another DMT as I have so many problems- can’t walk too far without assistance anymore, choking, , drooping arms and infections. Consultant believes I still have RRMS but just borderline of early progressive MS. Has anyone else had a similar experience? How did you get through it?
I’m so sorry to be reading this, and what you’ve been going through. If you’re in the uk complain to PALS! When I was in a similar situation I did research before my appointment and demanded to be referred for treatment, my new neurologist to one look at my scans and changed the treatment options which I started in October. It’s been rough, but I’ve learnt if you want to maintain what you’ve got you’ll have to fight for a higher efficiency treatment.
Thank you for taking time to respond to my question. Yes it has been pretty rough but I hope I am now on the straight from here. What choice do I have other than try my best for a half decent life.
I could see my consultant getting frustrated with every issue I presented. That’s when she said I’ve had a nasty relapse. So I am waiting now on my scan for my new DMT.
Is your neurologist a MS specialist? My first neurologist kept telling me it’s mild doesn’t need treatment. 4 relapses later I’m walking with a stick and a foot brace, and only able to work one day a week. So I demanded to be referred using the nice guidelines to fight my case. I hope you manage to get on a high efficiency DMT to slow it down and improve your quality of life. I wish you well x
Yes my neurologists specialises in MS. I would be the same as you because that is so unfortunate for you when you could get some more support.
Well my neurologist has to sit infront of a panel with the new mri results to convince them I need a stronger DMT. Makes it more difficult when I want to start a family too. Thank you, you too x
Tbh, when I saw my 2nd neurologist he offered DMT, but said he needs to see my MRI first once he saw them he changed DMT because of the brain stem lesion that my first neurologist had dismissed! Hence why I’ve been on kesimpta since October. I hope you get on the right treatment. Take care and I hope you don’t have to wait too long to start new treatment. X
Thank you @animali . I feel abit uneasy because I feel like I am back to the very beginning again, just waiting to get onto a DMT. In a way we are all in the same boat but at different stages. You too, take care x
Oh bless ya, I know that feeling well. I had to wait from December 2023 till October 2024 before I started a DMT. Stay positive, and keep pushing. It doesn’t have to be dragged out! From me seeing the neurologist to starting treatment was around 6 weeks . 
you hear something very soon, regarding results and starting a difference DMT .
Take care too x
Yes well I got my DMT really quickly after diagnosis. I got diagnosed in February 2024 and had my first appointment with MS nurse in early April 24. She showed me how to administer my medication. Expecting the same timing is probably making me uneasy too.
It is such a breath of fresh air to speak to people who completely understand this journey. X
Wow that was quick, which is a blessing really. I endured 4 relapses before I started a DMT. I know a lot depends on the area where you live to how quickly these things are processed. It’s better if you’re seen by an MS specialist as they have a greater understanding of the disease.
If you’re concerned give them a call, doesn’t hurt to give them a nudge. At the same time try not to worry too much, as that could exacerbate your symptoms. Have you tried some physio for your existing symptoms, I try and do exercises every other day to try and maintain the mobility I have.
Likewise, not everyone understands how it affects your daily life. X
I had mobility issues that weren’t getting better after a surgery on my left shin . Then I developed optic neuritis out of the blue. Intially I thought it was a really bad headache. Being a glasses person 
I attended spec savers for a check just to see what was going on. They referred me to eye casualty in which they said it appeared to be optic neuritis. I went for a MRI and that’s where my MS came to alight. Lesions everywhere. Everything was done so quickly I think I was in shock. Some people don’t get a diagnosis for years, even for you it seemed a long time.
Yes I attended physio but I don’t want to go back as they tell me nothing they can do. I walk everyday for ten minutes and keep everything moving I.e chair yoga. Exactly that’s why I never judge. This journey is more than enough. Thanks for the chat 
x
Bless you it’s a lot to get your head around. At least they got you started on a DMT quickly, and hopefully you don’t have to wait too long to start a new DMT. I also do daily exercises as I really don’t want to lose the mobility I have left, is chair yoga helping you?
It’s definitely a rough ride, that hits us all in various ways. Take care and 
you don’t have to wait too much longer for your results / DMT. x