My partner was diagnosed with RRMS this autumn and the support from medical professionals we have been given has left me confused as there has literally been none. Therefore, I was wondering if anyone here would share their experiences with the support they received from their doctors after being diagnosed so I could perhaps learn something from you guys about what is normal to expect around this whole process?
After my partner was diagnosed he was basically told ‘we’ll talk to you in 6 months to discuss medication’. All this is very new so I am unsure what to expect when it comes to receiving support, etc, but I thought maybe we would get something beyond this. No information about MS, nothing on what to do next, for instance about food and lifestyle in order to prevent anything, no info about forums online, emotional support, +++. Not even a leaflet. This has obviously left me to do all the googling myself, which is how I found this forum.
Before the diagnosis, he has had problems with his stomach for years after a course of very hard antibiotics his doctor put him on which lasted over a year. As far as I understand, gut health is brain health so I am even more confused why the doctors (first of all gave out antibiotics like that) didn’t mention anything about that. For instance that it could be important for him to restore his gut health/bacteria that was wiped out by the antibiotics, to be able to take care of himself with MS (we are working on it).
My question is, am I expecting too much about receiving any kind of support from the doctors after the diagnosis, beyond a 6-month wait for an appointment about the medication?
My partner has no specific symptoms and things are good. We are both in our mid-20s and he is dealing with everything very well - I think I might be the one struggling a little bit more.
I apologise if this became a little long/ a little ranty. Thank you, everyone.
Hi, I was diagnosed in May 2020, but i havent received much support either, this is the best place i found - you can ask questions and get opinions and advise - just remember we are not medics and can only offer our stories. My advise is dont focus to much on MS, everyone is different and no one can predict how it will affect your partner. Enjoy each day which is what everyone should do cos no one knows whats around the corner with or without MS. Keep a diary of any new/suspected symptoms and then forget them if you can. Take care
Hi, I was officially diagnosed on December the 2nd at my 2nd neurologist appointment, we discussed medication options and I decided what one I think (hope) will suite me. I will admit that the doctors did suggest to me at my 1st appointment that they would see me in 6 months but I really wasn’t happy with that and said I wanted to see someone before then because I had heard that the sooner you get on dmd’s the better. What I am trying to say is sometimes you need to push, you should have a ms nurse who can give you advice and if you know who your neurologist is phone their secretary and ask for a appointment ASAP, I don’t think you will get a face to face appointment but you can get the information you need from a telephone consultation. It is a very scary thing to be told. Good luck
I was diagnosed 14 years ago, started with optic problems, they disappeared, had no other symptoms for 2/3 years then developed a limp and things have progressively been slowly downhill since. Now the clinic are only interested if I can dress myself, my bedroom and bathroom are both on the ground floor.
Hi, it is quite common for newly diagnosed people to be left hanging in the air, wondering what the heck just happened?
It is not good enough but it happens!
With your partner having RRMS, I think it is more important to get an appointment (before 6 months) to discuss DMDs…the majority of people with RRMS are offered a drug which usually helps slow/reduce attacks and progression.
He should at least have been given some information about this.
Get your partner to ring the neuro`s secretary and explain his concerns.
You will get support and advice here. We are a friendly bunch with a wealth of experience.
Speak to the Patient Advice and Liaison Service (PALS) at the hospital your partner attends, and tell them you are unhappy that he’s not had any form of support.
I know, with the Covid pandemic, many of us are hesitant to appear to be demanding, given the pressure the NHS is under at the moment, but some neurology departments (neurologists) needed a kick up the backsides long before Covid 19 was even known about.
Thank you so much for your replies and for sharing your stories! This has been very helpful to me. I will take your advice further and talk to the doctors about everything. Thank you again!
Hi there- we have all had different journeys with MS. I do agree that you usually have to push to get what you think you need. I do suggest having a look at NICE - National Institute for Clinical Excellence for MS. This is basically the doctors “Bible” of what they should be doing. It is a long read but very useful and if you quote NICE at doctors they should understand.
I am sorry that you and your partner feel unsupported. As for general good-quality info about MS, I would recommend the main part of this MS Society site and also the MS Trust site. It’s all great and its all free.
The one area in which you might find their advice tired and disappointing is on diet and MS, particularly given your concerns on that front. On that, you might find Prof Giovannoni’s thoughts on diet and MS more to your taste (as do I). https://multiple-sclerosis-research.org/tag/diet/ Bear in mind, though, that this probably doesn’t - yet - come with the strong evidence basis that underpins the MS Society and MS Trust info.
If you can persuade your partner to read up a bit on the condition and treatment options and so on, it would be a good foundation for getting the most out of a specialist consultation, when that does finally happen.
Hi Julie, I got told at my first appointment that I had lesions and have been placed on a 6 month follow up also. You say you were diagnosed at your 2nd appointment, so did they tell you about the lesions then diagnose 6 months later? I’m trying to figure out why they told me about my lesions ans essentially said ok see you in 6 months. Very confusing.