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Living with Polyneuropathy CIDP, GBS, & CMT

Heebie Jeebies

Hi all, ive got CMT2 and bad restless legs. We talked abkut those thing.

My hands are gettong more clumbsy, my apologies.

Starting a couple months ago i started getting what im gonna call the heebie jeebies. Its like restless legs through my whole upper body, and nothing makes it stop. With RLS you feel the crawlies and move your legs and it goes away for a while.

This is while im wide awake walking, sitting, being active, it doesnt matter it just comes on, first time for an hour or so, last attack was more like 9 hours, kept me up throigh the night, despite being on gaba and taking sleeping pills.

Does this sound familiar to anyone? Please let me know if you’ve experienced anything like this.

I just had my low back mri taken and next week im going in to get a genetic test done. My neurologist has decided to do a deep dive into my condition, and this was before these new very intense sensations.

Thanks for reading, and hopefully someone can point me in some direction.

This happen to me also it all started with restless leg I was put on Pramipexole 0.25mg I will say this was very helpful for the night symptoms. But a few months later I went on vacation to Moab Utah a few days later had a severe case of diarrhea and started to be come numb starting at my feet and then the numbness ascending I was hospitalized they said I had GBS and now CIDP. I now get infusions I don’t know if I’m diagnosed correctly as my major symptoms are numbness,pain, very high SED Rate (inflammation) and now ver high anti thyroid antibodies I feel horrible all the time sadly and I have been shuffled from Dr to Dr with very little help. Because it neurological and people can’t see it there is a level of just being dismissed. I’m from New York and live in Texas health care is terrible my family is in CT and because I wasn’t diagnosed with a brain tumor or cancer that my family don’t get it I get you look fine pull yourself up by your boot straps. I would ask about the pramipexole you can hopefully get relief. Feel better Dawn

Heebee jeebees is exactly how I described my numbness and restlessness to my neuro. Diagnosed with CIDP back in Mar 2017. Had restless legs before all this so it got worse and it was over most of my body. Activity, which would help me get tired would fire up the nerves and I couldn’t sleep. I took gaba for a while and as of year three it is better. I still don’t sleep great, but the melatonin (5mg) has helped me get to sleep. Sometimes I only get an hour or two and wake with the that awful feeling. I try to distract with listening it sermons or other talks that are calm.

those are good calming techniques. Its good to know others understand what I’m talking about.

Now if we could just get something to lessen or get rid of these unwanted sensations!

living with invisible diseases is incredibly difficult if you don’t have the support of family and friends!

thank goodness my wife is awesome, and my neuro is chasing down all leads.

I’ll check into pramipexole!