Hi all,
i was diagnosed by my neurologist after an mri showed lesions on my brain and spine! This was 6 weeks ago! I have since seen my ms nurse and I’m seeing my gp every month or so whilst I try some medication for some symptoms!
I am waiting to see the specialist and my nurse called to chase as after 6 weeks I have still not heard anything. I currently don’t have an appointment as there is 40 people on the waiting list and he is fully booked up until the end of July so anticipate it won’t be until atleast September!
I have been hugely positive and I have been so focused on getting on some treatment but today has left me feeling really deflated. I have had what the dr thinks is atleast two relapses in the last 6 months and although I am okay, I have noticeable changed. I know DMD’s don’t completely stop relapses but I feel so helpless that mentally, I think knowing I’m on something that is atleast trying to prevent me getting worse, would feel so much better than just sitting with no control at all.
how long did it take you to see the specialist and discuss treatment? Is 5-6 months normal? What if I get worse and treatment could have helped? What if he wants to do further tests which will make treatment options even further away!
hi i remember the frustration of the diagnosis procedure. i know and understand that the NHS is under a lot of pressure but september? i have been very lucky because i’m under salford royal and they have a lot of neuros so if for whatever reason it gets cancelled another neuro will stand in. not ideal because it’s starting again with a different neuro but it’s better than nothing. positive thinking is great but you want to be taking action. why not look into alternative therapies. i have HBOT High Dose Oxygen Therapy which is great. find your nearest ms therapy centre and see if they offer it. i go to one in trafford near manchester. if you ask on here someone will know what’s near to you. i would estimate that it took 5 or 6 months for me too. you could look into pilates classes because they are great for the core and a strong core will be a fantastic asset. the specialist neuro doesn’t really discuss the drugs but the ms nurse does. please stop stressing because stress makes your symptoms go haywire. if you cannot calm yourself, try to learn mindfulness meditation. good luck
Thank you for your reply! I have seen the ms nurse and she has said the specialist will discuss treatment? The nurse did go through all of the options but said the specialist will advise what may be best for me?
There is also the possibility the specialist will want to do further tests due to my diagnosis coming from an mri and symptom discussion only. I don’t know? I just want treatment so this doesn’t get worse!
I guess it varies depending on the local circumstances? My wife was finally diagnosed 14th March, met her MS nurse 16th of this month ata home visit and already has an appointment through for 11th june which is a group session for newly diagnosed patients to learn about the DMD’s,see the way they inject etc and help them make the choice.Don’t know how long it might take from oncemy wife makes choice to start them though but atleast it seems things are happening now!
One thing you can do while waiting for your appointment is to learn as much about the diagnosis as possible, try starting here: Newly diagnosed | MS Trust
And then there’s the disease modifying drugs (DMDs) that you can educate yourself about: MS Decisions aid | MS Trust You won’t have completely free choice of the DMDs but the more you know about the options the better. Hopefully it will speed up the starting of the drugs once you see the neurologist.
The other thing I would urge anyone newly diagnosed is to improve their fitness as much as possible, in particular the core. This could pay real dividends in the future.
Hopefully this year you won’t have any further relapses while you wait for the appointment and you’ll be in the best shape possible to start the DMD treatment.
Sue
Thank you all so much! I do have an update: my lovely nurse thought September did seem quite a while away and asked if I could see another specialist and low and behold a cancellation had come in today for a week on Tuesday! I have all the information about the Dmds so will work my way through that!
1 Like
Excellent news, I’m really glad for you.
Sue