Hi everyone, I’ve not posted here for a very long time! I was diagnosed with benign ms back in 2005. I had a few problems with optic neuritis up until 2007 when I started to get some numbness in my left leg. Again in 2009 i had two episodes of numbness/tingling in my left leg but it radiated to my left arm too. I was seen by the neurologist and MRI performed, where they said the lesions had progressed and I was now upgraded to relapsing remitting ms. The team offered me disease modifying drugs but my husband and I wanted another child so held off. I suffered the most debilitating relapse in February this year, where I lost complete feeling below my waist and was unable to walk unaided. This relapse was a complete shock to me and I really struggled with the thought of my ms progressing further. I am working part time (two 13 hour shifts a week) and I am struggling with many more symptoms now, such as neuropathic pain and lots of cramps in both legs. Yesterday I have become numb all down my right side and again this is difficult to deal with. I have been referred back to the neurologist, my appointment is this Thursday. I just wanted to know if anyone has any ideas what I should expect this time and if anyone has any questions they think I should ask? Thanks in advance xx
Hi, write a list of your symptoms and questions…but try to keep them as brief as poss, as long as you dont forget anything which will help the neuro.
It`s been a good while since your last MRI, so the neuro may order another.
have you had the child you wanted now? If so, perhaps DMDs are appropriate now?
Hello and crikey, sounds like you’ve been in the wars. Firstly and from my own experience I would say be honest with neuro and take advice. Before you go for appointment have a think about what could make your life easier - physio? referral to pain clinic? drugs etc then you know what to ask for. If you are not on DMD’s yet it might be time to think about it and discuss with neuro. You are the expert in your condition so don’t be afraid to ask for what you need. Also have a think about work and what might make things easier. You are protected under the Disability Discrimination Act and your workplace have to make reasonable adjustments for you but they won’t know what those are unless you tell them. I know it’s grim after a relapse and you worry that it’s start of the slippery downwards slope. However remember that mobility aids are there to help you to enable you to do things so don’t be afraid to use them if they stop you being in so much pain. We all struggle on but often it’s only when we accept using a stick or scooter or whatever that we realise how much better life is! My relapse in January has left me in a wheelchair but honestly I wish I’d started using one at least a year before rather than struggling on in pain! After all it’s only a tool to get me where I want to go so try not to be worried and use any means necessary to keep living life to the full. Best of luck to you xx
Thank-you both for the words of wisdom. We have now completed our family and I will seriously think about disease modifying drugs. At work I am definitely supported well but unfortunately there is little adaptations that can be made. Thanks again xx
Your progression sounds somewhat similar to mine. I had no relapses for the first seven years after diagnosis. I did lose a bit of function over this time. Then I started to have increasingly frequent relapses. I was offered Tysabri 22 months ago. I wish I had been offered it a lot earlier - I would probably be in a much better state than I am now. It is the most effective dmd - reduces progression by, on average, two thirds. Worth begging for.