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Welcome to the PLMT Community
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kmaze001 posted:
Hello to everyone who finds this new community! I suffer from PLMT, and I am looking to connect with others who have been diagnosed with this strange and rare disorder.

My diagnosis came after tens of thousands of dollars of testing--MRI's from (literally) head to toe, plus blood work, and EEG, an ultrasound of my foot, and a nerve conduction study. The neurologist who finally diagnosed me did so in ten seconds without even looking at the stack of test reports. All he did was watch my foot. He was not particularly hopeful or helpful. He suggested Botox injections as a way to control (but not cure) my symptoms. That was three months ago, and I've not yet made the decision to go forward with that.

Although I do have some pain, it is not disabling. But the constant movement can be maddening. I would love to hear from both fellow sufferers and from those in the medical community who may be able to shed some light and offer hope. Almost all the literature I have found online is scientific and not for patients. Perhaps together we can find answers and bring more awareness to this condition.
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geoffleach responded:
Hi. I imagine that you've figured out by now that we share a somewhat rare condition. Did you try the Botox treatment?

My PLMT seems to be associated with my idiopathic progressive peripheral neuropathy in the left leg. I've been treating the neuropathy with Gabapentin, 600 mg/day, with increases as required to suppress the pain. The PLMT diagnosis is recent and, just like you, the specialist took one look at my foot to get it.

The neurologist suggested Botox and/or Newpro. I'm leaning towards the Botox.
 
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kmaze001 replied to geoffleach's response:
Hi Geoff--

My doc suggested Botox also, but I have some reservations about it. First, it's painful. Second it's temporary. I think I'd get so depressed when the movements returned. The other thing is that they have to numb up a good chunk of your foot to give full relief, and that could affect your gait. What if that happens? You're stuck with it for three months. What is Newpro? Is it a similar drug? Can you let us know what you decide to do?

Best,
Kim
 
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Lisavila responded:
Hello everyone, I'm surely happy that I found this group. I was diagnosed with PLMT 3 hours ago by Dr Yuen So in Stanford. I've been agonizing over my leg and foot pain for 5 years now and, after endless testing and therapy, I finally got a diagnosis.
Just like others on this site, the doctor took a look at my foot and diagnosed it just like that. The leg and foot pain bothers me, but the twitching toes do not bother me.
Surprisingly, I'm relieved with the fact that this affliction has an actual name and it's not just on my head.
I'm supposed to go back next week to get an EMG done, then they will come up with some sort of treatment plan. I'm on a medical leave for 6 months, but as an eternal optimist, I hope to go back to my job. I'd love to learn about your stories, how you cope with this ailment, and whether you're able to lead a self sustaining life. Thank you!
 
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kmaze001 replied to Lisavila's response:
Hi Lisavila and welcome!

Yes, it's a relief to get a diagnosis, albeit one of a chronic condition. Is the pain that bad that you cannot work? I have twitching toes and achy feet, but very little leg pain. I am lucky, I guess. I've had this condition for going on two years.

I'm curious: Why is your doctor ordering an EMG? You have your diagnosis. Also, would you share with us your treatment plan once you get it? There are no treatments that I am aware of, other than Botox to stop the twitching. Maybe he is referring to pain management? I have gotten some relief with Neurontin. It seems to help with the movements to a degree.

I started this group about six months ago. Since this is a rare condition, there are only a handful of members. Can you tell me how you found us?

Again, glad you've joined our little group!

Kim


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