new member and lots of questions

[SuzanneMB]

thank you for providing this vehicle to talk with all of you.
I have had rls for about 45 years. I started on medication about 10 yrs ago. I take mirapex.
I was having VERY low blood pressure and my family dr referred me to an internist who determined my low bp was a side effect of taking mirapex. And I had started needing more and more.

The Dr also determined that i had been on too much mirapex and told me to immediately start weaning off. that was in the middle of July. a few days after starting to reduce my Rx my walking / gait became very stiff. my gait has continued to get worse.
sometimes i shuffle,
on a bad day i use a cane,
I walk slowly,
my balance is off,
my lower legs feel heavy, sometimes numb or tingling
my knees feel like jello.
on a bad day I am exhausted.

on a good day my gait is better. I think it is normal but my family says ii is from it!

i have had extensive blood work - all normal.

I have just started reading the forum looking for info on side effects but I cannot find any reference to my symptoms.

are my issues common when someone goes off the RX? I was on 'too much' for 3 yrs.

looking forward to your thoughts

SuzanneMB

[Rustsmith]

A few details about how much Mirapex you were taking (we have people who have hit the max dose for Parkinson's) and how quickly have you been tapering would be helpful. Also, have you been experiencing severe insomnia (which is also part of RLS)?

Stiff legs and a stiff gait are symptoms of Parkinson's Disease, which is also treated with Mirapex. The neurological difference between the two, which occur in the same part of the brain, is that we have too much dopamine with RLS and it is the dopamine receptors on our nerve cells that consume to dopamine are not functioning correctly. Taking dopamine agonist meds just forces the few remaining receptors that are functioning to work harder. With Parkinson's, something kills the nerve cells that produce dopamine, so were we have an excess of dopamine because we cannot consume it, they don't have enough and need to supplement their natural dopamine with a dopamine agonist.

I am just guessing since I don't know how fast your are tapering, but it might be possible that you are tapering the Mirapex too quickly and your brain hasn't had a chance to catch up with natural dopamine production because you have been feeding it Mirapex for a long time. BUT, you also could be experiencing Parkinsons now that you have reduced your dopamine intake.

Rather than talking with a GP or Internal Medicine Physician about this, you need to be talking to a Neurologist - and more importantly - a Neurologist that specializes in Movement Disorders. There are several sub-specialties within Neurology and talking to a doctor who isn't familiar with treating both Parkinsons and RLS would be a further waste of your time and would delay getting the help that you need.

[SuzanneMB]

i think i deleted my reply by accident

my maximum dose was .25 mg x 8 tabs.

i went from 8 to 7 to 5 tabs in 7 to 10 days. Then the Dr said to stay on 3 tabs - no more and no less.

I do not have insomnia.

A referral to a neurologist is a year - I live in Ontario Canada. BUT i recently met a neighbour who is a neurologist. I will reach out to her.

thank you for your detailed reply
Suzanne MB

[badnights]

Wow. You poor thing. Your new doctor is plugged into the right networks, because 3 x 0.25 = 0.75 the maximum now being recommended by WED/RLS specialists.

You were on an awful lot of pramipexole, and you came off it very quickly. I haven't heard of that causing your symptoms, though. I agree with Steve that you should see a neurologist who specializes in movement disorders ASAP. If the referral says you need to see someone about RLS/WED, then it should be changed - can you see the doctor who made it? You need to see someone for balance, stiff gait, and numbness, which could be the symptoms of a serious neurological illness.

I suspect your wait is 1 year because you are being triaged near the bottom of the list - that is, regarded as not in danger.