Anyone ever experience this medical mystery?

For seven years my sister has had severe, crippling pain in both legs. As if you ran five marathons , she described it. Plus, twitching also in both legs, it never stops. She's had every test done, every blood test, neurology etc. there's nothing that shows up. She now has neuropathy in her feet too, but two doctors have said the pain and especially twitches in her legs aren't typical neuropathy symptoms. One neurologist did believe that her leg issues is also neuropathy.

She's had a couple pain meds but they didn't help. I know there's many more however. Anyone ever hear of this mystery in her legs?? She can barely walk it's so bad. Thank you ♥

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boklenholley7 · F

What pain meds did they try? If it's neuropathic pain, only certain types of pain meds work... and you can order those types online very easily. 🤷‍♀

But I'm not a doctor and the symptoms you describe are weird. Like you say, twitching wouldn't be a neuropathy thing. My initial gut reaction would be to check electrolytes, salt, and potassium. If she's on other meds, maybe an interaction?

If it's neuropathy, the next question would be why the sudden onset. The only thing I know of off the top of my head that causes sudden onset and long last neuropathy without obvious visible injuries or disease (stroke, dementia) is MS.

Again not a doctor.

Baybreeze · 41-45, F

@boklenholley7 They tried Lyrica but that was for her feet. I believe they tried oxycodone for her legs but she's afraid to take a higher dose because she got a small reaction to it. I believe it's Bec she had no food with it. But not sure.

I think they did a brain MRI and I don't believe it's MS but sometimes lesions can show up later. I'll have her ask her doctor about it.

boklenholley7 · F

@Baybreeze yeah, lyrica would treat neuropathic pain. Or gabapentin would be another common one. Oxy wouldn't touch neuropathic pain, but if she was responding to it at lower doses it might be a hint it's not entirely neuropathic.

MS is tricky af to diagnose, even in the most obvious cases because it can look like so many other things and has a lot of other issues that usually occur simultaneously. It muddies the waters.

If nothings working for the pain, has she tried cannabis? Even topicals can work wonders. And it works on both neuropathic and "regular" pain. Might be something to consider.

Baybreeze · 41-45, F

@boklenholley7 I have CBD cream , she tried it once on her feet, it didn't do much. But maybe she can try on her legs as well. It helps my jaw pain. Only for two hours but at least it's something.

boklenholley7 · F

@Baybreeze might be a strength thing? Plus, CBD and THC have amazing properties on their own, but they work much better when combined. You can get flavorless powdered CBD online. It's just CBD but maybe you could play with the dose? Ofc idk the laws in your area, so that can get tricky.

Baybreeze · 41-45, F

@boklenholley7 Ty I appreciate your ideas.