I’m wondering how long people waited between receiving their diagnosis and being seen at DMT clinic / starting treatment.
Everything has been handled so badly. I had a lumbar puncture at the beginning of July, didn’t hear anything until a phone call with MS nurse at the end of August, where I was diagnosed over the phone. I haven’t seen or even spoken to any Neurology Drs since May 2024. All I’ve had since is a letter with my lumbar puncture results on (which I did not understand and had to Google most of - though I’m still mostly confused about the results).
This has been ongoing since January when I had a case of optic neuritis. Everything has been mismanaged since then and it’s making a difficult time even worse.
Did anyone else receive this same handling? Can you please tell me what the norm is when waiting to go to DMT clinic? I’m only
25 and just feeling so lost, frustrated and upset.
Hi Lauren,
I remember you said you were in the process of multiple sclerosis diagnosis, yes it took about a year to be dx, after having MRI and neurological assessment; the lumbar puncture happened much later.
Tbf I already knew they suspected MS and they didn’t really tell me the result of the LP, only that MSers usually have a higher content of T-cells in their spinal fluid.
I choose to wait about 9 years b4 I opted to try DMDs, simply because my MS got better on its own until it came back again.
I think after initial dx, you will be offered DMD treatment by your neurologist, it’s your choice if you take it or not; I’ve recently chosen to come off DMDs now after 15 years.
Hope you have news soon,
JP
Do you mind me asking where you received your diagnosis? I am from Northern Ireland and it was pretty quick considering not having a good track record of getting diagnosed quickly. Diagnosed end February- Treatment started in May. MS nurse explained it is in my best interests but it is my choice whether to begin a treatment or not. To be honest I still feel very lost. Not sure whether that is denial? I hope whatever you choose is the best outcome for you. Take care and best wishes, Bronagh x
Hi Lauren. Gosh, it does sound as if your case is being handled very badly. I now can’t remember how long I had to wait - it’s was around 18years ago - but it certainly wasn’t as long as your wait. I do remember phoning a MS nurse and getting a bit stroppy. I kept phoning and , perhaps unfairly, asked ‘do you think it is acceptable that patients have to wait so long’.
If I were you I would definitely phone and e-mail, and demand to know when you will be offered treatment, mention that it is of course best to start treatment as soon as possible ( and that all the evidence and trials show that treatments reduce relapse rates etc) and that you want to start soon or to have an explanation as to why you aren’t receiving treatments. As for it all to be put in writing in the post or email.
Hi Laura
Optic neuritis was detected at the royal eye casualty. I was referred immediately within a day or two by Specsavers. Everything went in a spiral very quickly. Optic nerve went pale, severe pain behind my right ear, glared vision. MRI at this stage was only prompted because of my painful symptoms and change to my optic nerve. I was advised this was only precautionary so nothing to be worried about. First MRI went ahead at the royal , multiple lesions on my brain. I started falling a lot, I couldn’t drive atall, swallowing fluids nearly impossible without choking. I informed my GP and she sent an urgent referral through to neurology. Dr Gray contacted me on the following Monday asking me multiple questions. (Bear in mind I have a hefty medical history including high blood pressure and cancer scares. Tumours removed etc) I needed a second MRI very quick to compare changes if any. Multiple changes were detected. Enhancement detected in third MRI. I think the Catalyst was I have a cancer scare history, optic nerve damage and physical problems.
I never heard a thing between Christmas and February of this year after all that. Then I got a diagnosis at a random hospital appointment late February. I would suggest contacting neurology outpatients and explain when you are going to be seen.
Aw god help you…sounds like youve been through so much bless you
Im with Fiona Kennedy Neurologist in the City Hospital. Ive also been seen and spent a few days in the Opthalmology Department in the Royal a few months ago.
Just waiting now on my LP results but I feel good other than some numbness and tingling in my hands so Im remaining optimistic!
All I can do is hope and pray it will go easy on me. No point thinking about it or I’d be in a very bad place. I never got a lumbar puncture but I assume it is quite a common procedure to diagnose MS? Wishing you all the best. Thank you
Hi Lauren - I had an appointment with my MS nurse a few weeks ago & saw Dr McDonnell in the City hosp Belfast last week - only reason is that I rang up as they have a new computer system & I kinda dropped off the radar - Dr McDonnell was happy enough with me & continue on copaxone injections - I hadn’t seen him for two years but I guess I am thankful that I’m still on my feet but have a good bit of pain & stiffness - I was diagnosed in 2001 - I would make enquiries
I think the Catalyst was I have a cancer scare history, optic nerve damage and physical problems.