Hi my dad is 72, diagnosed with relapsing MS at age 40.
His relapses normally subside after a week or so but his latest has been ongoing for over a month and not subsiding.
He has been on the same treatment for 30 years and he spoke briefly to a pharmacist re potentially changing it as it is no longer having the same effect but it was thought that it would be too risky to increase at this stage and he already on the maximum dosage.
His MS support is virtually none existent with it taking months to get an appointment. I wondered if anyone has had any success with private MS care? Or has had similar situations with treatment losing efficiency and switched?
I haven’t but I do wonder if I should change to one of the more recent and more effective ones. To do that however, I would need to speak with my MS Nurse.
Has your dad contacted his nurse about the decreasing effectiveness?
I’m slightly puzzled by your references to dosages. Is your Dad on a Disease Modifying Treatment or is he just provided with a Steroid?
I’m just over 70 and use Avonex - one of the early treatments and something that I inject once a week
When I was first diagnosed I was allocated an MS nurse, and I had an appointment with the ms team every six months. After six or seven years nothing much had changed and so my MS seemed relatively benign and I no longer had any scheduled appointments with them. This is fine for a few years until one hot summer day I had a massive relapse including optic neuritis. Try as I might I simply could not get hold of the MS team, as I seemed to have fallen off the list. After several weeks I made a private appointment to see the neurologist I had previously been seeing, I’m glad I did. After my consultation he told me he would be making sure I was down for the next available clinic at the NHS hospital with the MS team I used to go to. He said that the private sector really cannot deal with long-term or ongoing conditions such as ms because they do not have the infrastructure.
I’ve rambled quite a bit there I’m afraid, sorry, but I really would not have been able to cope at all without the MS team at my hospital. It is a proper multidisciplinary team who know everything there is to know about how to navigate healthcare and that what’s your father really has to have. My experience of trying to access the team suggests that providing is not a big problem (I had private medical insurance via work, thankfully) absolutely do make the appointment privately. You really have to make sure it is the right neurologist that you’re going to though, who works eyesclosely with an MS team. If you don’t know the main one for your area is, ms society support groups are dotted all around the country and I know that most of them have some sort of Facebook group so that might be the place to start, to find out which hospital and consultant is the one to try and get to see. It could also be useful to check with your surgery and GP practice, they may well have other patients with MS and therefore knowledge of who the best consultant is. They may even have details of the MS team and be able to get you an urgent referral.