certainly someone must have seen a neurologist

[Eternityroad]

Hi,
I posted the following over a week ago but it received no replies. I am supposing I posted it in the wrong area. I am really interested if others have seen a neurologist and if their experiences were similar to mine. Can RLS have something to do with nerve damage in legs, for example. Have others had the tests they want to give me? What can I expect? I have been posting in this this forum for many years and have received help and support for the many issues I have had. Now that helpfulness seems to have dried up.

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

[Polar Bear]

Some years ago I was referred to a neurologist and felt that it was a waste of time and money. It very much depends on the neurologist. Even those who say they have an interest in RLS may not have the expertise required for someone who suffers extremely.
I've been a sufferer for some 40+ years and fought it on my own for about 20 years because my primary care doctor knew nothing about RLS.
Since about 15 years have struggled through by using the Mayo Clinic Guidelines and trying to teach my Primary Care Doctor. As previously mentioned the Neurologist he referred me to was less than useless.

Eventually last year I was referred to a Movement Disorder Clinic by a new doctor to the practice. I didn't even know this Clinic existed and what a wonderful experience that was. The Consultant knew exactly what RLS did to the sufferer, she answered my questions before I could even ask them. I do use Kratom occasionally (it is illegal where I live) and have not mentioned it to any doctor. However, I actually have a review appointment at this Movement Disorder Clinic tomorrow and am thinking on mentioning the Kratom.
I agree your neurologist showed no empathy to your symptoms and a discussion on medication and dosages in the absence of Kratom would have at least been reassuring and at best an opportunity to try a change in medication/dosage that could be helpful.

Your question.... can nerve damage in your legs have anything to do with RLS. My answer is, I don't know.
A Consultant has previously told me it has nothing to do with RLS. We know that dopamine plays a part.
But there are also triggers. I also have nerve damage, neuropathy in my legs and feet. There are times when I'm not quite sure if my symptoms at a given time are RLS or neuropathy, probably a mix of the two. But does nerve damage cause RLS, I don't think so but that's my personal opinion. I certainly think it makes my symptoms feel worse because RLS symptoms at the same time as possibly the burning sensation of neuropathy (nerve damage) can be overwhelming. Feeling things strangely or not at all is so indicative of nerve damage. I feel it daily, the numbness in certain areas, the occasional burning in other areas. There is also the non responsive to pin pricks.
Just to note, I've recently had a lumber spine MRI because of severe hip pain. The MRI shows disc degeneration and compressed nerves and it's likely that the compressed nerves are causing the hip pain. But this nerve pain is acute, stabbing, very painful. It is not the slow, rumbling, tortuous discomfort of RLS. Of course nerve damage can cause all sorts of sensations and I am certainly open to any explanations.

You have mentioned bloodwork and you are a long time poster so I'm guessing you are aware of the need to have your Ferritin Serum level up around 100. (I apologize if you have mentioned this elsewhere).

It's great that at your visit you felt you had found someone who understood you. They also diagnosed your leg nerve issues.
With regard to Kratom, as mentioned, the long term effects aren't known and most will not officially support its' use.
However, his attitude wasn't good when he wanted you off the Kratom but didn't provide alternative support.

[Rustsmith]

I have seen a number of different neurologists over the years. Some where totally ignorant of RLS and two are experts. My current middle neurologist (not the expert) thought that she was familiar with RLS, but her knowledge was 20 yrs out of date. I recently saw her for migraines and gave her two different publications (one was the recent updated treatment algorithm paper). She thanked me and said that she was going to read them. We will see.

As for leg nerve conduction, there was some research work a year or two ago that thought that they saw something. But they were looking at peripheral nerve conduction in the arms using state of the art, research grade equipment. It has been my assumption that when neurologists do these leg nerve conduction tests that they are either 1) justifying the cost of the equipment or 2) trying to rule out neuropathy as the cause of the symptoms.

[Eternityroad]

Much appreciated. Thank you both.

My ferritin was a bit low when tested last year. I started taking 65 mg of iron along with vitamin C on an empty stomach. Lately though it has been making me nauseous so I ceased taking it for awhile. I am aware that infusions could be the
answer but that procedure is expensive e and I don't think my insurance will cover it.

[Rustsmith]

Finding a hematologist who will perform an IV treatment for RLS in the absence of anemia can also be challenging.

I had a thought following my last most about the message that you didn't receive any replies to. There have been instances of "missing" posts when the post was rather long. The system has a timeout that can sometimes occur before your actually hit submit and for some reason, it does not provide an error message to let you know that everything you just typed just disappeared. Perhaps that was the problem if your post was long and took a while to compose because I really do not remember seeing anything like that topic before (although I was not up to normal during the past month due to a long term migraine).

[Eternityroad]

Rustsmith,
Regarding the possible missing post: I posted in the Non-prescription Medicines, Supplements, Diet area. Entitled: Visit To The Neurologist. It is still there and with 44 views. Could I be the only one who sees the content even though the post is accessible in the list?

Ken

[Rustsmith]

I just read through your earlier post and I have to say that I do not remember seeing it before. But that was during a time where I was just barely getting by. My only comment about it is that you didn't ask any questions or request any comments. It just seemed like a report about a trip to the clinic where they did a number of tests that diagnosed peripheral neuropathy in your legs. Perhaps that is why you didn't get any responses. Either way, I will add a few comments after typing this.

[Dr.Placebo]

Eternityroad, I have a few comments, from both the perspective of doctor(past) and RLS patient(present)

My memory is shot from chronic sleep-deprivation and meds but a few comments on referrals to specialists:

When a PCP refers to a specialist it is expected that the specialist will go beyond what the PCP can, or knows how to, do. So typically the specialist will do or order more involved and expensive testing, essentially looking for possible, though usually very unlikely causes for the patient's symptoms, i.e., "ruling out" everything else before confirming that you just have "primary" RLS. Some of the testing may be motivated by financial interests but I think mostly it is just "what specialists do." And if there are students or residents involved the sky is the limit.

You actually got off pretty easy from what you said was ordered although I am not clear if you have just classic RLS symptoms--in which case I don't see the need for further testing--or if there was something in you history that was suspicious for a secondary cause of RLS.

And, BTW, the thing that looked like a tuning fork was a tuning fork. Sometimes we use one or sometimes 2 different frequencies to test for Vibration Sense--quite sensative for diagnosing peripheral neuropathy --and COSTS NOTHING! Same for using cold to test for temperature sense, a needle to test for pain sensation, and moving your big toe up and down to test for Position sense.

These simple physical exam tests are quite sensitive and accurate in experienced hands, and a good family physician should be able to do them, but they generate no revenue.

I don't know your full story, so if your physical exam tests were abnormal, or your history suggested peripheral neuropathy, then the tests ordered were probably reasonable and justified in order to further clarify the cause of the peripheral neuropathy and localize its source. In that case my cynicism about generating revenue is not justified.

I have written a lot so I will post about my unhappy experience as a patient seeing a neurologist some other time.

[Eternityroad]

Dr. Placebo,
I have no prior history of nerve issues. That is why it surprised me when I could not feel the vibration from the tuning fork. My GP was brand new and I think she made the neurology referral as a matter of course rather than pressing RLS issues on my part.(she hadn't heard of Kratom)RLS Symptoms are slowly worsening but I manage them with Kratom and a tab of hydrocodone. I am grateful for anything these neurologists can give me especially if they discover nerve issues I didn't know I had. I have an electromyography schedules for Friday.

Ken

[Dr.Placebo]

Ken, I wish you the best on this difficult road we travel. I assume you have been screened for diabetes, a common cause of peripheral neuropathy? At some point you should try and nail down the neurologists on whether the tests or procedures they are doing will actually change your treament or the course of your disease in any helpful way, because other than diabetes, the treatments for peripheral neuropathy overlap those for RLS--gabapentin and pregabalin being 2 treatments often prescribed to treat painful neuropathy; nothing can be done as far as I know to treat sensory loss.

If what they are doing will not alter in any helpful way the treatment of your condition, you may want to think about how far you want to continue with the work-up, once they have ruled out anything treatable or unexpected.

Regarding your kratom and hydrocodone, and the fact that the neurologist showed a lack of understanding by recommending you taper off the kratom without offering a substitute, I can just repeat what the moderators and others have said: the best thing would be to see a true RLS specialist to manage your RLS medications (and maybe prescribe long-acting opioids or dipyridamole), but I know that is not always easy or possible.

I'm not a moderator or an RLS doctor (I am an RLS patient doing the best I can) and you should take my recommendations as well-meaning but possibly flawed.

Paul

[badnights]

Hey Ken,

If I was in your situation, I would not decrease my kratom (unless I coincidentally felt that I was taking more than I needed) until/unless something else was provided to manage the symptoms. You are right, he was wrong (in my opinion). Your symptoms are being treated by the kratom, and the kratom is not - as far as we can tell - harming you, so he should not advise you to stop it without recommending an effective alternative.

I don't think we're ever going to know what caused our condition, why did it go from being background noise to a problem, why does it flare up sometimes, etc. A lot of people with WED/RLS have peripheral neuropathy, so it might be related somehow; but a lot of people with WED/RLS don't have PN. Also, your neurologist was right about the iron, sort of: for some of us, intravenous iron helps so there must be something wrong with the way our bodies regulate iron, but for others, iron seems to make no difference.

I posted the following over a week ago but it received no replies. I am supposing I posted it in the wrong area. I am really interested if others have seen a neurologist and if their experiences were similar to mine. Can RLS have something to do with nerve damage in legs, for example. Have others had the tests they want to give me? What can I expect? I have been posting in this this forum for many years and have received help and support for the many issues I have had. Now that helpfulness seems to have dried up.

You certainly didn't post it in the wrong area. There are many members here, but only four of us volunteer moderators. We don’t do much moderation – mostly we try to make sure that every post gets an answer. Maybe because we’ve been so on top of that in the past, members may feel shy about posting replies themselves? But our members have a lot of valuable experience and opinions to share, and it would be beneficial for all if more members posted!

I am saddened that our helpfulness isn’t what it used to be. I can make excuses for us – we’re all having health problems, because we all have severe WED/RLS and we’re also getting up there in age – but speaking only for myself, I’m trying to keep a full-time job going, and that honestly has become too much for me. I used to be on here every day, but a few years ago, my symptoms became much worse and I couldn’t even do my job, let alone volunteer work too. More recently, since I started the Gupta Program almost a year ago (and now DNRS too), I feel a lot better, but the cost is over 2 hours a day of intense “brain re-training” and meditation. And I still don’t seem to have the energy to work full-time….

The Foundation is always looking for volunteers, including discussion board moderators - - https://www.rls.org/get-involved/volunteer

If what they are doing will not alter in any helpful way the treatment of your condition, you may want to think about how far you want to continue with the work-up, once they have ruled out anything treatable or unexpected.

That sounds like sage advice to me.

[Eternityroad]

Beth,
Thank you for taking the time to write your helpful response. Friday I had a battery of tests and it was determined I had peripheral nerve loss in my feet. They did not attempt to relate that to RLS, but they advised me to make an appointment with the movement specialist at the neurology center where I was examined. I still have to get blood-work and then a final appointment in January with the physician who told me to cut back on Kratom, which btw I am not doing.

When I tried to set up the appointment with the movement specialist the receptionist told me the doctor wants me there a half-hour before my 8:15am appointment. Paperwork? No. Tests? Didn't say. The doctor wants all his patients there a half hour before. This did not sit well with me. I am going to change my appointment and tell them I will be there 10 minutes before time for my appointment as I usually am, unless they can give me good reason why I need to be there 30 minutes before my scheduled time.

Ken

[Polar Bear]

When I see my Movement Disorder Specialist (as I did last week), before I see her the nurse checks my blood pressure lying down and standing. Not much else, mind you. Did you ask the receptionist why so early. Ours want us to arrive no sooner than 5 minutes prior to the appointment time.

[Polar Bear]

"""I am saddened that our helpfulness isn’t what it used to be. I can make excuses for us – we’re all having health problems, because we all have severe WED/RLS and we’re also getting up there in age – but speaking only for myself, I’m trying to keep a full-time job going, and that honestly has become too much for me. I used to be on here every day, but a few years ago, my symptoms became much worse and I couldn’t even do my job, let alone volunteer work too. More recently, since I started the Gupta Program almost a year ago (and now DNRS too), I feel a lot better, but the cost is over 2 hours a day of intense “brain re-training” and meditation. And I still don’t seem to have the energy to work full-time….

The Foundation is always looking for volunteers, including discussion board moderators - - https://www.rls.org/get-involved/volunteer"""

I have posted an extract of Beth's post that I wish to endorse. Speaking for myself as a Volunteer Moderator I think perhaps we don't wish to appear as though we are struggling. I have 3 other chronic conditions as well as WED/RLS and yes also getting up in years. I wish I had more energy and more time. We try to make sure we register a new applicant as speedily as possible, bearing in mind that this person may be desperate to ask a question that is so important to them. And we do our best to make sure every new post receives a reply. Occasionally we miss something.

Dear Members, please do keep posting, every opinion and every question is important no matter how minor it may sound, a 'by the way' comment may be just the thing that helps another Member. Never be wary of posting. Never be afraid to vent and get stuff off your chest, never be afraid of sounding naïve.

We would love to hear from any Member who would like to be considered as a Volunteer Moderator.

[badnights]

When I tried to set up the appointment with the movement specialist the receptionist told me the doctor wants me there a half-hour before my 8:15am appointment. Paperwork? No. Tests? Didn't say. The doctor wants all his patients there a half hour before. This did not sit well with me. I am going to change my appointment and tell them I will be there 10 minutes before time for my appointment as I usually am, unless they can give me good reason why I need to be there 30 minutes before my scheduled time.

Sounds like he just wants to make sure people aren't late. from this "Paperwork? No. Tests? Didn't say. " I take it you asked them if there was paperwork to fill out or anything else to account for the time required and they couldn't explain it.

If I were in that situation, I think I would keep the appointment time and just arrive 10-15 minutes early as usual, without saying anything or making a fuss with them.

But actually, I would have asked for an afternoon appointment to begin with. Morning appointments for me (and you?) are like 4 AM or 6 AM appointments for normal people.