Overwhelmed: Navigating RRMS and Mental Health"

Hi everyone,

I’m not looking for advice per say, I’m just very deflated right now and wanted to post in place with other people who have MS because it feels like no one around me understands.

I currently have a diagnosis of RRMS, highly active at the time of diagnosis in 2016 and was on Tysabri up until around august last year. I also have severe depression which has significantly complicated how I’m dealing with my MS. Early last year, I developed debilitating paranoid thoughts about medication amongst other things to the point I am unable to take medication for anything, including the Tysabri. The last time I went for a Tysabri infusion was August last year. I was on this drug for 7 years before this and it supressed the MS so much that I hardly experienced symptoms. Since being off the Tysabri, I have experienced symptoms on and off, mainly sensation changes in different parts of my body. More recently, I have lost the function of my right hand and arm, and it’s all very numb. I am unable to do basic things like pick things up or tie my shoe laces, brush my teeth, or write without difficulty. I have never actually experienced symptoms that affect functioning before. This is the first time. I have also been under section on a psych ward for 3 weeks, discharged today. When I was on the ward, they arranged for me to have an infusion of Tysabri, but I had a complete meltdown at the time of the appointment, and I couldn’t go.

I’m just at a loss at the moment and feel like i need to brace myself for a more debilitating relapse. My MS team don’t understand the mental health side, and I’ve not even been offered a neurologist appointment with them. They only communicate with me through the mental health team. On the other hand, my mental health team doesn’t understand the MS. I also have an eating disorder to complicate things even further, and they are obsessed with sorting that out before everything else. I was discharged from the ward today with no medication and no mention of the MS.

I have so many thoughts with no way to challenge them right now. I have a follow-up with my community psych team in 2 weeks or more and an appointment with the eating disorder service.

I’m so confused about the MS right now and the seriousness of the situation, I have no neurologist follow-up or MRI, and I have no idea if they will be seeing me. I feel like they could’ve offered reassurance of where I’m at, at the very least? I’m just holding on to hope that because I have RRMS, I will recover or ‘remit’. Are there other things I could be doing to recover faster from relapses that have helped you? I was thinking of seeing a physiotherapist privately but unsure if this would be helpful or if I should wait until feeling returns in my arm/hand. Or even if a private physio would accept me!

Thanks for reading this far, I know it’s all a bit of a mess at the moment but I guess I just feel really isolated and wanted to share my frustrations.


Hi Nora.

How long ago did you have the last relapse ( when your arm felt numb). So far as I know the only thing that can speed up recovery is steroid treatment but I think that’s best done not too long after a relapse. With or without steroid treatments,
recovery is never 100% and relapses do leave long term damage and some loss of functioning

So, and sorry for the blunt and probably dumb question but what is that you fear, are paranoid about ? What is the paranoia?

I do feel for you but trying to overcome the paranoia seems like a priority to me ( depending on the severity of your eating disorder).