Hey all
I am 2.5 years in remission now and very happy about that but in the last 12 months my mobility has really deteriorated. I had been raising it at hospital appointments but they didnt seem concerned however I decided to go to my GP who has said she believes i have neuropathy. To be honest she wasnt happy the hospital had been so lax in doing anything about it.
Has anyone been diagnosed with this?
My ability to walk up stairs is us terrible unless i have a handrail or something on both sides, even chairs need to have arms for me to get up. I have fell a number of times where my legs just give way. So far i haven't broken anything. I can't even get myself back up when i fall which is horrrible.
I have another check up next week as well as an appointment with a neuro specialist (i have booked a private appointment as i dont wana wait on nhs) the following week but I am afraid now its been left too long and can't be treated.
Can anyone in the same position give me any advice?
Thanks
Nicola xxx
I finished my treatment in April this year and I’ve struggled with weak legs. Mentioned to specialist who blow me off with it’s nothing or just fatigue. It’s getting worse as I have pain in my hips now & arms and even my feet. I’ve been told to try Pilates but I feel like I have arthritis or something else but I’m only 50 but feel like I’m 80 in the mornings. GP suggested a neurologist but I thought I was getting better when I went on a holiday to just relax in warmer weather. Now that I’ve been in cold weather for 6 weeks, it’s getting more painful
I have fibromyalgia and these are the symptoms I have. It can be caused by a traumatic event, which could be the cancer etc.. Have a look online at the symptoms. Could be worth a mention to your gp. Xx
Thanks for your replies. I have had my check up and they are referring me for an MRI and i have another appointment next week so fingers crossed i can get a diagnosis!
Hi Nicola.
Reading you’re post makes me really sad. I finished my treatment in March 2015. A few months after I noticed tingling in my legs and a weakness that hadn’t been there pre cancer. getting up stairs was a nightmare, my legs constantly gave way and I was falling loads. By Jan 2016 I was using crutches and a couple of months later was given a wheelchair. My consultant wasnt particularly interested, I had an MRI for possible recurrence which was clear. I was referred to a neurologist who could find no reason for my weakness. I was told it was likely treatment related, neuropathy, and something I have to deal with. I am now unable to walk. My legs are completely numb from the knees down. I am completely wheelchair reliant and can only stand during Physio with the aid of a hoist. I get half an hour Physio every couple of weeks from the NHS and have been told there is nothing they can do.
I did my own research and came across a condition called radiation induced lumbarsacral plexopathy (RILP) It’s a supposedly rare side effect of pelvic radiation. Do a google search and have a read of the little information there is out there. Reading the case study was like reading my own story. If you are on Facebook there is a RILP group that are amazing. Most of them have been diagnosed with RILP and are a wealth of knowledge. A lot of them started Physio at the first sign of weakness and have managed to get back some mobility. They also recommend hyperbaric oxygen therapy and numerous vitamins etc. They are also working to get RILP as a more recognised side effect of treatment.
I hope this helps. Feel free to message me if you need to.
Take care
Becky x
