new doctor, neurologist referral (?)

[Eternityroad]

My GP left last month and just had my first appointment with the new GP today. Very positive. Though she knew of RLS and also Kratom she hadn't known that RLS could be treated with opioids. She renewed my prescription for Lortab but at half the daily dose which works for me because I have been using it with Kratom. I also gave her the booklet the Foundation sent me for GP's which she graciously received. She also referred me to a neurologist. So I am left with the question: what I might expect from a neurologist?

Ken

Admin: Please change this to another category if it doesn't suit this one.

[Rustsmith]

Ken, my story for this week is very similar to yours. My GP is retiring Nov 1 and I spent all of August trying to find a PCP that would be willing to write refill prescriptions for me. I went through nine Family Practice clinics associated with my former doctor and every single one of them refused to accept me as a patient UNLESS I was willing to let them exclude treating my RLS (I take a low dose of methadone). I finally found a PA who was willing to accept me and he didn't feel the need to exclude treating my RLS. I guess that it helps that he used to work in an addiction recovery clinic, so he understands how minuscule my methadone dose is. He said that he also had a former patient who lived in the nursing home across the street from me who took a bit more methadone for RLS.

As for what to expect from the neurologist, expect anything. It could go great or the doctor might not even know what RLS is, much less how to treat it. Last year, I had a referral to a neurologist who was supposed to be the most knowledgeable doctor in town when it comes to treating RLS (that isn't saying much since none of the other neurologists understand RLS). I waited six months to see this woman and one of the first things out of her mouth when I said that I wanted her to be the go-between with my RLS specialist at the state medical school was "I don't do methadone". I had high hopes for her and found that I had wasted six months waiting to see her.

So, you could once again be pleasantly surprised and find a gem. But you could also find one that has you running back to your new GP with the hopes of being able to educate her.

[Eternityroad]

Steve,
Wow! Those were a lot of hoops to jump through to end up as it did. I live in Las Vegas where there are no RLS specialists, according to my search of the Foundation site. So I was surprised to find a GP with her level of interest. My last GP wasn't interested in RLS but was good enough to understand and did prescribe the hydrocodone for me. I guess he figured that at age 74 and given my excellent health I was not exactly the type who would abuse the medication.

Have you tried Kratom? The reason I ask is that Kratom is often used in place of methadone.

Thanks for sharing your story.

Ken

[Stainless]

If you Donn't mind me asking, how do you ingest the Kratom? I tried it long ago and it was like choking down a tablespoon of ground up herb. I did it for a few weeks and did not feel any drop in RLS.

[Stainless]

As far as "what I might expect from a neurologist?" My experience is from soup to nuts. Some are really smart and informed but in Florida we are so backward they will not go far from the approved RLS medication list.The last 2nd opinion was really sharp, great bedside manner and very informed about RLS although he had never had a patient. He would not take me on because he could not offer relief.

[Eternityroad]

If you Donn't mind me asking, how do you ingest the Kratom? I tried it long ago and it was like choking down a tablespoon of ground up herb. I did it for a few weeks and did not feel any drop in RLS.

No problem. I would be happy to answer. I mix the Kratom with Nestle sugar-free chocolate powder, add water, stir and drink. I have been using Kratom since 2017. Within the past year I began using it in tandem with hydrocodone so I don't build up a resistance to the herb. Over the years I have had to up my intake of Kratom by 2-3 teaspoons due, I believe, to worsening of symptoms. But The Kratom for me has been as effective as a full regimen of hydrocodone which I was on for many years.

Btw thanx for the input on neurologists.

Ken

[Polar Bear]

Eternityroad - I'm not sure I get i get much relief from Kratom. I take 2 teaspoons on top of my regular meds when it gets difficult. What dosage would you be taking.

Stainless - I put two teaspoons of Kratom into a mug and top with some boiling water, give it a good stir and leave for a while. It kind of dissolves. Toss it back and follow with a good couple of swallows of orange drink. Sometimes I also add orange drink to the Kratom solution. If possible I prepare this well before I plan on taking it so it has time to dissolve.

[Eternityroad]

Eternityroad - I'm not sure I get i get much relief from Kratom. I take 2 teaspoons on top of my regular meds when it gets difficult. What dosage would you be taking.

Stainless - I put two teaspoons of Kratom into a mug and top with some boiling water, give it a good stir and leave for a while. It kind of dissolves. Toss it back and follow with a good couple of swallows of orange drink. Sometimes I also add orange drink to the Kratom solution. If possible I prepare this well before I plan on taking it so it has time to dissolve.

I use about 12 tsp Kratom per day. Right now I use hydrocodone to get through the afternoon because symptoms are not as bad as later. My med schedule runs something like this:

noon- 1 lortab 7.5 x 325
4:30- 2 tsp Kratom
7:30- 3 tsp Kratom
11:00 2 tsp Kratom
1:00am- 2 tsp Kratom
3:00 am 3 tsp Kratom.
I don't use any meds between 3 and noon.

Some days are terrible, maybe 3 times a month when nothing seems to be working. I just take 1 tsp Kratom every half hour until symptoms go away.
I also use hot compresses as needed. While waiting for Kratom to kick in hot compresses to the knees and upper legs calm them until the herb takes effect. I used Requip for two weeks about 12 years ago but it never provided relief. Two years ago Dr. prescribed Mirapex but having read the horror stories about augmentation I continued using Kratom. I have had to up the dosage of Kratom over the years. In 2017 when I began using it I was taking only 8 tsp/day.

Ken

[Polar Bear]

Thank you for this. Interesting to see how much it takes to provide your relief.
I would veer towards icy cold treatment for temporary relief. Shows how different we all are.