New Member, Hello!
Posted: Fri Nov 13, 2020 7:15 pm
Hi everyone,
I'm a 41 year old male, just recently given a working diagnosis of RLS despite no history of this in the past. Symptoms are a lot of what is described here...crawling, twitchy sensations in the legs, mostly calves. Only comes about when attempting to rest/relax and is abated when walking about. Worse at night but after a few nights of bad/limited sleep starts to encroach into the daytime. Muscle jerking at night when attempting to fall asleep can keep me up all night. As I write this I've probably gotten about 6-8 hours of low quality sleep over the last 72. Paradoxically, I dont really even feel that tired though as I would expect, so dunno what thats all about. So not much fun as I'm sure everyone on here knows.
Got referred to a Neurologist in my local area who ordered an Iron/Ferritin test (as well as a thyroid/B12 test both normal). Numbers seem normal. 110 ug/dL Iron, 124 ng/mL Ferritin. Prescribed me a couple days ago Ropinrole at 0.25 mg, have taken one each night past couple nights and nothing, no improvement. Just a slightly nauseous stomach. Was going to try to go for 0.50 mg tonight and if that's a fail just stop trying with this.
So anyways, kind of lost at the moment, since Im new to this was hoping to get in here before I get too far down the road on treatment for this to maybe avoid some common pitfalls that doctors or patients make while trying to find something that works. I have heard not great things about dopamine agonists like Ropinrole as a first cut, so maybe some folks have a better idea of what to try or suggest to my Neuro. My Neuro seems competent but the office itself is a bit of a mess, can wait for 30-45 minutes to get someone on the phone to make an appt, they faxed the wrong blood work order to the lab and i had to drive across town to get the right blood work done, etc.
So hello, wish I could say I was glad to be here, but I am encouraged that their seems to be a vibrant and committed community to help socialize the particulars of dealing with this disease and would love to hear any advice/experience anyone might have!
I'm a 41 year old male, just recently given a working diagnosis of RLS despite no history of this in the past. Symptoms are a lot of what is described here...crawling, twitchy sensations in the legs, mostly calves. Only comes about when attempting to rest/relax and is abated when walking about. Worse at night but after a few nights of bad/limited sleep starts to encroach into the daytime. Muscle jerking at night when attempting to fall asleep can keep me up all night. As I write this I've probably gotten about 6-8 hours of low quality sleep over the last 72. Paradoxically, I dont really even feel that tired though as I would expect, so dunno what thats all about. So not much fun as I'm sure everyone on here knows.
Got referred to a Neurologist in my local area who ordered an Iron/Ferritin test (as well as a thyroid/B12 test both normal). Numbers seem normal. 110 ug/dL Iron, 124 ng/mL Ferritin. Prescribed me a couple days ago Ropinrole at 0.25 mg, have taken one each night past couple nights and nothing, no improvement. Just a slightly nauseous stomach. Was going to try to go for 0.50 mg tonight and if that's a fail just stop trying with this.
So anyways, kind of lost at the moment, since Im new to this was hoping to get in here before I get too far down the road on treatment for this to maybe avoid some common pitfalls that doctors or patients make while trying to find something that works. I have heard not great things about dopamine agonists like Ropinrole as a first cut, so maybe some folks have a better idea of what to try or suggest to my Neuro. My Neuro seems competent but the office itself is a bit of a mess, can wait for 30-45 minutes to get someone on the phone to make an appt, they faxed the wrong blood work order to the lab and i had to drive across town to get the right blood work done, etc.
So hello, wish I could say I was glad to be here, but I am encouraged that their seems to be a vibrant and committed community to help socialize the particulars of dealing with this disease and would love to hear any advice/experience anyone might have!