Hello all.
I’ve been lurking for nearly 7 years now. No big episodes, but a slow list of new things happening. Still no diagnosis, and therefore no access to help.
Got a doctor’s appointment next week, so thought I’d pop a quick update here to help me get things straight. The worst of the new stuff is pain, like sunburn. I’ve had tingling feet for years, but my right leg (always the right one!) has had painful skin for a year or so. Just the lower front of my shin, and my foot. Unfortunately this has gotten worse, and it’s now both legs and feet, up to my butt. Getting dressed, undressed, sitting down, standing up, squatting, moving around in bed - all blinking painful.
What I’m hoping is that I’ll get referred back to neurology, and they’ll make more of an effort in figuring out if it’s my peripheral system or cns that has the problem.
My right hip flexors do next to nothing these days, my right knee reflex is barely there (one of the pointers for peripheral neuropathy rather than ms) and I’m fed up of things getting slowly worse without being able to do anything to slow it down (or stop it 
). My tinnitus (started early 20s) is also getting really bad, but maybe that’s my age (55) 
.
Anyone got any top tips for explaining the leg pain to the doc? I do have a problem with downplaying things, and not thinking of the right questions to ask when I’m there.
Ta
Mali
Sunburn’s a great analogy. I have had that one, and it’s one of the few MS things that actually does feel ‘like’ something normal. If you can describe the feeling as being like something, it’s really helpful.
Other examples: like leaning against a warm radiator. like walking into the edge of a hot grill pan, legs feeling like over-stuffed sausages etc. These are all from my own experience; you will have yours. But these things are notoriously hard to describe, and analogues are never perfect. Good luck.
Thank you. That’s perfect. The ‘over stuffed sausages’ triggered a memory too! Before I started to think of it as being sunburn, and it was just a patch on one leg, I thought it felt like my skin was too stretched as if my leg was swollen.
Oh, what fun life is 
So, lovely new doc understood straight away. Lots of muscle and reflex testing, and tapping me with an unfolded paper clip showed various degrees of muscle weakness and patches of numbness on my legs (that I had no idea were there).
She’s doing an urgent referral to neurology, but has warned me that the waiting list is big. She’s also given me some gabapentin for the pain. Think I had something different last time, so hoping this doesn’t make me as sleepy.