Hi went to see new consultant yesterday but seen registra instead as my consultant i originally seen in 2022 has left.
He asked me how ive been doing so i told him
1 I have had really dry eyes and so dry my eyelid has been stuck hard to open.
2 I have such painful feet and they feel buzzy all the time day and night
3 I suffer with a crawling feeling in my thighs back and stomach mainly when im walking somtimes it lasts a while other times it just goes.
4 I get random twitching and somtimes choking
He said does not think ms symptoms iv had these symptoms since diagnosis sending me for my next mri and will write to me results i think certain consultants just dont know what they are doing
I can see where he’s coming from, because relapsing remitting would mean that you have it and then it goes, and because these aren’t going it doesn’t sound like relapsing remitting. That doesn’t mean it’s not MS though! The choking sounds worrying, and if it’s related to MS he should’ve referred you to the speech and language therapist to investigate. Have you been diagnosed with progressive MS? I would contact your MS nurse about all the issues you’ve mentioned above, they should have an opinion on them and if the registrar has missed anything they’ll be able to pick up on it and deal with it.
I think you should make an appointment with an optician for the eye, and see what they recommend. It would probably be helpful to speak to your GP as well, they need to make sure that you do have a consultant neurologist responsible for you.
Hi yes i was diagnosed in 2022 with remittance ms i seen a optician who said to tell my consultant
Thank you for your help i have booked a gp appointment kind regards
Relapsing, Remitting MS doesn’t necessarily mean you fully recover from a relapse, you can be left with residual symptoms it depends on how much damage is done with the relapse. I only have feeling in about 25% of my head/face and it’s been this way since diagnosis December 2023. I have numb areas on my body, neurogenic bladder, bowel issues all from the first relapse, food and medication allergies, dry eyes, dry mouth, I’m dealing with these daily and they’re affected every time I have a relapse. Trigeminal neuralgia, which feels like my head is being crushed and because of the nerve damage a slight draft causes so much pain.
The only thing I will say is eat a healthy balanced diet, exercise and start a DMT. I had 4 relapses then changed neurologist and was started on treatment very quickly because of the brain stem lesion. This has helped with some residual symptoms, but others I will have to live with. But hopefully kesimpta will slow it down. If need be advocate for yourself, and use the nice guidelines.