Visit to the Neurologist

[Eternityroad]

My primary care doctor referred me to a neurological clinic. It is a clinic of medical residents overseen by full-fledged doctors. They did a number of things to diagnose possible nerve damage in my legs. The most interesting thing was an instrument that looked like a tuning fork. When he touched it to my wrist I felt a definite vibration. When he touched it to my knees and feet I felt nothing. Also touched my leg with a cold hammer shaped device, only it did not feel cold like it did when he touched my hands. He told me to get off the Kratom. I told him I had been on it five years with no bad effects. He said they didn't know the long term effects. "Well what do I replace it with?" He replied, "Cut back 1 or 2 teaspoons a week." Also told me that some cases of RLS have nothing to do with Iron deficiency.

They set me up for bloodwork, a TM Flow test and nerve conduction study/ electromyography test down the line.

He didn't give me anything to stand in for the Kratom. I am just supposed to cut back. Kratom has been a leg-saver for me, but my symptoms are gradually worsening. Five years ago when I began using Kratom I was using 8 tsp/ day. Now I am up to 13-14 tsp. And that is in addition to using Hydrocodone by itself in the afternoon.

The nice thing about this visit was finding medical personnel who seemed familiar with RLS, unlike my past primary care providers. Also they diagnosed nerve issues in my legs which I had no idea I had. I just didn't like his attitude toward Kratom. You don't tell someone to cut back without giving them something to substitute. This tells me he really doesn't know what RLS is like. If I reduce the amount the symptoms will come back for that period. I will try to cut back but if I have problems with the symptoms I going right back to the usual dosage. Hopefully by my follow-up appointment in January (yes, January!!) he will have some sort of solution.

Ken

[Rustsmith]

First off, testing with a tuning fork on various joints as well as testing your sensory ability with the cold hammer are both standard neurological tests when looking for conditions such as peripheral neuropathy. My wife has MS and I have seen both of those tests done on her by neurologists over the last 50 years and I have had a few neurologists do the same thing during initial appointments where the doctor was confirming the absence of any issues other than RLS.

As for the comments about kratom as well as the statement about "some cases of RLS have nothing to do with iron deficiency" both strike me as residents that are not up with the latest information about RLS. I can sort of understand kratom since the FDA has come close to banning it and even the Foundation discourages its use since there is no quality control and there have been reports of heavy metal contamination. But the statement about iron and RLS just makes them seem out of touch. When the updated consensus algorithm for treating RLS and the latest research all point toward iron deficiency in the substantia nigra portion of the brain as the root cause of RLS, someone seems to be missing something somewhere along the line. Johns Hopkins and the NIH have both done loads of research on this topic, so I would be cautious if I were you. But, that doesn't mean that they don't know what they are doing. Maybe they tried to simplify the explanation a bit too much. Or, they could be like the neurologist who treats my migraines (not my RLS) whose information was at least 20 yrs out of date even though she was supposed to be the best neurologist in town (she had not heard of augmentation until I handed her a copy of the paper on the updated treatment algorithm and suggested that I try carbidopa/levodopa, which has been discouraged for daily RLS use since the 80's).

[Eternityroad]

Thank you. That clarifies things alot.

[jul2873]

My primary care doc also tried to get me to stop taking kratom. She wanted me to switch to Lyrica, and I did try it for awhile. I found it didn't help my RLS nearly as well as the kratom did, and it had many unpleasant side effects. I've taken kratom for 10 years, with good RLS control and very little in the way of side effects. And, since I'm 78 and figure I'd rather stick with kratom, my primary care doc wrote in my record that I was "very very non-compliant." So I switched doctors.

The one time I understand you really do have to stop the kratom for a bit is if surgery is scheduled for you, since there is little research about how kratom interacts with drugs they may give you during surgery.

[Eternityroad]

My primary care doc also tried to get me to stop taking kratom. She wanted me to switch to Lyrica, and I did try it for awhile. I found it didn't help my RLS nearly as well as the kratom did, and it had many unpleasant side effects. I've taken kratom for 10 years, with good RLS control and very little in the way of side effects. And, since I'm 78 and figure I'd rather stick with kratom, my primary care doc wrote in my record that I was "very very non-compliant." So I switched doctors.

The one time I understand you really do have to stop the kratom for a bit is if surgery is scheduled for you, since there is little research about how kratom interacts with drugs they may give you during surgery.

Thanks. I was on Zolpidem for awhile but the doc would not allow me to be on two Class A medications (Hydrocodone, being the other) At the time I needed the opiod more than the sleep medication. The Zolp wasn't treating the RLS and eventually after taking the Kratom awhile I had no problem sleeping.

Thanks for tip about Kratom and surgery. The only surgery I anticipate down the line is knee surgery. I always thought that the opiods they give after surgery will nip the RLS, at least for awhile.

Ken

[jul2873]

I did also have knee surgery but wasn't told to stop the kratom before that because, I think, they were going to just give me a local. And they did give me pain meds too, oxy. In fact, I still have some of the oxy they sent me home with. I save it for long plane rides. And since I've never taken it except for a short time for surgery, just one oxy will usually give me almost the whole plane ride.

I read somewhere that kratom lowers blood pressure because it makes the walls of your cells more flexible. I don't know if that's true, but I do know that it seems to keep my blood pressure low.

[Polar Bear]

I attended my appointment with my Neurologist at the Movement Disorder Clinic this week and decided to broach the subject of Kratom, see what she thought about it. She'd never heard of it and googled it. Commented after a one minute read that it was a member of the coffee family and that she wouldn't be keen to see it used. Kratom is illegal where I live although I do have it and use it randomly. She does appear to be pretty well versed regarding the treatment of RLS.

[Eternityroad]

Betty,
My hope is that Kratom is more widely accepted and that it becomes universally legal. Good you can at least use it randomly.

Ken