LIKE many patients will progressive multiple sclerosis, Jenny Potter spent a long time struggling to get a correct diagnosis.
The former playgroup leader, 52, had moved from Lancashire to Scotland with her husband and three sons in 2004, and began suspecting something was wrong a couple of years later.
She said: “I was needing to go to the loo a lot so I went to the GP and they said ‘well, just do some pelvic floor exercises’. But I was getting lots of urinary tract infections and then I found that I would be walking and suddenly my leg would give way and I would fall.
“So I went to the GP with that and they said ‘oh well, I think it’s your ankle’ or ‘oh, I think it’s your knee’.”
Eventually Mrs Potter, who lives in Balfron, Glasgow, underwent an operation on her ankle which doctors thought would strengthen the joint.
“They said ‘you’ve got a 70 per cent chance of being able to walk normally after this’. Of course, it made it much worse and I ended up back at the GP where this older lady, a locum GP, gave me the most thorough examination I’ve ever had. She sent me for an MRI scan in 2011 and the rest is history - but it took about five years.
“I had had a suspicion [it was MS] so I was upset, but at the back of my mind I already knew that it was something like that. I was angry that nobody had joined up the dots beforehand.”
Mrs Potter, who is originally from Lowestoft in Suffolk, continued working as a playgroup leader until 18 months ago but was forced to retire early as the physical strain became too much.
“I was able to do the craft work and things like that, but I wasn’t able to do the physical activity with them. I was finding it difficult to pick the children up, so in the end I had to call it a day.
“I can’t walk anywhere without a crutch, even in the house. If I go outside it’s usually two crutches, although sometimes I can manage with one. If I’m going any distance I need a wheelchair.
“I tend to be better in the mornings and as the day progresses I get steadily worse, so I tend to try to do everything I need to do in the mornings - like going out.
“Sometimes I can’t physically move my left leg, so I’m dragging it and that’s when I need to use the wheelchair.”
Mrs Potter says one of the biggest frustrations - besides the lack of drugs for progressive MS - is the misunderstanding among non-sufferers.
She said: “There was the Olympic runner [Kadeena Cox] with MS, and you do get comments like ‘if she can run, how come you can’t walk to the end of the street?’. You’re sort of put into one category, but everyone with MS is slightly different.
“I was offered medication for spasms, but the thing is the medication makes you more tired and fatigue is the big problem for me. If I took something that made me more tired I would be comatose. I manage the spasms myself. I’ve always done yoga - I can’t do some of the positions I used to because I’ve been doing it since I was 19 - but I do what I can and it helps with the spasms.
“Something that stopped the progression would be great so that I don’t get any more disabled. That’s the big fear - how disabled am I going to become?”
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