I was diagnosed with RRMS 25 years ago and until 2016, had experienced relapses which cleared over 3-4 months. Then I had a bad relapse which took my right leg away completely from my brain. I had my first course of steroids and again fully recovered in 3 months. I started Tecfidera and although it really heats me up, I didn’t have a relapse in 2017, which seemed to break the annual pattern I had experienced for 4 years previously.
then I started to struggle walking. In June this year, I caved in and started using a stick. By August that wasn’t enough so I bought a rollator with a seat and moved around ok. Now I am really struggling to walk very far, even with the frame.
I have had little help from my GP, although he prescribed amitryptiline to help me sleep and Baclofen to help with the leg cramps. Sleeping is very difficult as I get pains in my hips, thighs and front of my lower legs. I rarely get more than 6 hours sleep most nights and that’s on the amitryptiline and Zapain. All night long I rub BioFreeze and/or Voltarol over my legs to try and get some relief but it is so painful.
Getting up in the morning is a true challenge too as I feel like the tin man trying to walk to the loo! Add to that the fact that I live in a first floor flat and have to brace myself for the 2 flights of stairs down to get out and then walk round to my car with my frame. Once I am in the car, it is fine but then I have the same performance getting out at work.
My Gp referred me to the musculoskeletal clinic and I visited the physio 3 times before he conceded defeat and referred me to the pain management team but now I have to wait till the end of November to see them.
My MS nurse has now referred me to the neurological physio team but I have no date for an appointment yet. She is convinced that MS is causing my mobility issues and pain so I am, concluding that I am now experiencing SPMS. I have not had a relapse but my body is giving up and I just don’t know what to do now. Where do I go to get advice? I have an appointment with my neurologist in 3 weeks but he is not an easy man to deal with.
I apologise for the long essay but I need help. Do other people with SPMS get better or is this it, I am permanently disabled now? I understand everyone is different but I would like to hear from other people. I think I need to prepare myself for a lifestyle change but am I being over dramatic? It’s so hard, not being able to find anyone who understands what is happening to me, to help guide me through this. I know it’s not a relapse, I’ve had lots over 25 years and this is completely new to me.
Any advice will be most welcome