Hi everyone. :) I've been here before but can't for the life of me remember my login details, so this is my new login.
I was diagnosed two years ago now with "probable MS, but atypical", and there's been no new symptoms in that time other than my feet where it all started (numbness, pins and needles, electrical pains when touched etc). I've had other signs and symptoms over the years but that was before I started seeing a neuro and the one I saw has dismissed all of those because she can't see the "proof" on an MRI. I have lesions (about 18 of them) not typical of MS, paraesthesias in my feet and various other places, a few times in the past 20 years I've had bouts of crushing chest/rib/back pain where every muscle has spasmed at once and left me barely able to breathe without excruciating pain (the longest one of these attacks lasted only about 6 hours thankfully). Since the last two years have been relatively symptom free (aside from the feet of course, but that's been a constant and I'm used to it) I had sort of forgotten about the MS thing and decided it must have just been nerve damage (although blood tests and nerve conduction studies said it wasn't).
Anyhoo.... back to today's question. After two years of relatively minor problems with my feet, I've started getting some other issues, and it's only come on since the recent hot weather (I live in Australia). My feet have gone back to being really painful to walk on at night and early in the morning (a symptom I had a couple of years ago that had since gone away) and it feels like I'm walking on golf balls. They feel scorchingly hot, bruised, swollen and aching right to the bone, yet to touch and look at them you'd think nothing was wrong. At the same time this started up I've also had weakness in my left arm which is most noticeable when I go to karate because I find I can't hold that arm up for very long in any of the fighting stances, and I've also had a weird spot on my right thigh about the size of a grapefruit that aches to the bone and burns like someone is holding a flame to it. The thigh itself doesn't hurt to touch, doesn't look or feel different to any other part of my leg. I've also had bouts of shakiness in one hand, and my right eye recently went foggy and blurry for a week or so.
So.... after all that.... does this sound like it might be a relapse? Or just something brought on by the heat? The hot feet are the biggest concern because it stops me sleeping. I'm sitting here now alternating between soaking them in a bucket of cold water and letting the fan blow a cold breeze over them.
Any thoughts? I suppose a trip to the neuro is in order, but at this time of year it's almost impossible to get an appointment and although I saw a private neuro last time I can't afford that any more so I'd have to go on the public waiting list which could take months.
To this untrained and undiagnosed brain, it sounds like a.possible relapse with the possibility of other stuff mixed in. The foot thing sounds to me a lot like plantar fasciitis, something with which I suffered for about two years when I worked in retail, on my feet all day on concrete floors.
I'm not sure what evidence you new neuro is looking for. Have you had other testing done, like blood work to rule out mimics, lumbar puncture etc.?
Another possibility for your foot issues is neuropathic pain. This is one of my ongoing MS symptoms. There is absolutely nothing wrong with my feet but they can hurt like hell. It is often an intense burning sensation like Athletes foot. alternately they can feel like someone just dropped a bowling ball on them. On really fun days it was both!
There are meds available to treat neuropathic pain. I take a combination of 3600mg gabapentin and 50mg amitriptilyne daily. It took a bit of trial and error to find the right mix, but when we did my feet stopped hurting entirely!
Ouch, Kyle! Hurts to think about it! You're absolutely right, though. My neuropathic pain (or at least that s what we think it must be) is all behind the eyeballs, like on the back surfaces of them, especially the left one. It could, though, happen anywhere a person has nerves, conceivably.
Thanks for the comments. :) The pain is all over the foot, including my toes, so I'm not sure about plantar fasciitis. I'm making an appt with my GP soon and will ask about it.
I had complete bloodwork at the beginning of the diagnostic process, so we've ruled out all the other mimics. When my last neuro wouldn't budge beyond "probable MS" (without a definite dx you can't start any drug treatment here) I said to her "OK, so what other possible causes can there be for what's going on with my feet, and how can we test for them" and she said there was no other possible cause. *shrugs*
The only thing I haven't had is a lumbar puncture, because the neuro didn't think it was warranted. At our last appointment she just said call me if you get a new symptom and we'll schedule another MRI. The thing is, considering the cost and delay in getting an appointment with her, I'm wondering if my relatively minor stuff is enough to be considered a new symptom, or will I be wasting my time and hers over just a heat reaction.
I wouldn't worry about wasting her time. It sounds as if continuing to see her is a wast of your time. I don't know how things work in Australia, but I would look for a new neurologist if possible. Your current doc can;t tell you what's causing your problems, but knows it's not MS? Can you find an MS specialist?
Relatively minor stuff can be managed, but that doesn't mean it's not MS. I managed relatively minor stuff for 20 years before learning that all of my minor stuff added up to MS. Suddenly things that seemed entirely unrelated were entirely related!
The annoyng thng is that my neuro IS an MS specialist, one of only a few in my city.
I've made an appt with her for the end of January and managed to get an MRI referral for 21 December (at 10 o'clock at night!!!) I was cheeky and asked for it to include brain and spine, and at a hospital with a T3 machine. The last one she only did my brain on a T1.5.
I figure if there's anything to see I may as well give her the best possible chance to find it, right?
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