Not sure if this is RLS or not

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capot1948
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Not sure if this is RLS or not

Postby capot1948 » Tue Jan 16, 2018 5:28 pm

First of all thanks for the add to the forums. A bit of history, since Feb of last year I have had a problem with involuntary foot stomping - https://youtu.be/Q8kQLcymZhc (hopefully I'm not in trouble for posting this link to a video my wife took). My VA neurologist has literally given up on diagnosing me. I've been to different movement disorder specialists including one at the Baylor College of Medicine. After a 3 1/2 hour appointment there and watching my video her conclusion is that I have atypical restless leg syndrome. I don't know if I agree with her or not as I don't have this problem lying down at night trying to sleep or other times that are associated with RLS that I've been able to find. The other possible diagnosis I've gotten from other movement specialists is possible Orthostatic Myoclonus or Orthostatic Tremor, since these are just 'possible' I see them as just guesses. I'm getting very frustrated with all these 'guesses' that are being made.

A bit about my history, I'm a Vietnam Veteran who was exposed to Agent Orange while serving in Vietnam. I have a history of Ischemic Heart Disease which is attributed to my exposure. Back on 7 Dec, 2013 I started to experience balance loss which continues to this day.

I'm hoping someone can at least tell me that no, this is definitely not RLS that I'm experiencing so I can move on to something else as to the cause.

Chris

Rustsmith
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Re: Not sure if this is RLS or not

Postby Rustsmith » Tue Jan 16, 2018 7:19 pm

Chris, sorry that you have having this problem as well as getting a diagnosis. Most of us had problems getting a diagnosis, so we can relate.

There are no tests that can be conducted to diagnose RLS, so there is a series of questions that a patient and his/her doctor answer for the diagnosis. This link will take you to that diagnosis http://irlssg.org/diagnostic-criteria/.

Some doctors have also tried giving a patient a single dose of a dopamine medication called Sinemet (carbidopa/levodopa). If the issue is RLS, this will produce an almost immediately stop the symptoms for a short time. This med cannot be used for extended use, but if you have RLS it will help and if it doesn't, then you probably have something other than RLS.

Finally, since you appear to be in the Houston area, one of the leading RLS experts in the country is Dr William Ondo, who practices at Methodist Hospital in the Medical Center. He is also a movement disorder specialist, so you might want to give him a try even though it may take a while to get a new patient appointment.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
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Re: Not sure if this is RLS or not

Postby stjohnh » Tue Jan 16, 2018 7:39 pm

Chris, Steve's advice sounds perfect to me. Yry and get your doc to try Sinemet or Mirapex (similar). If no improvement it is almost certainly not RLS. Otherwise see RLS specialist.
Blessings,
Holland

capot1948
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Re: Not sure if this is RLS or not

Postby capot1948 » Tue Jan 16, 2018 10:14 pm

Steve, thanks for the quick reply. At the first site you linked I can positively now say that by reading the criteria I do not have RLS.

1. An urge to move the legs usually but not always accompanied by or felt to be caused by uncomfortable and unpleasant sensations in the legs.1, 2

I have no unpleasant sensations in my legs when my 'foot stomping' starts

2. The urge to move the legs and any accompanying unpleasant sensations begin or worsen during periods of rest or inactivity such as lying down or sitting.

It's just the opposite for me. The video that was shown was while I was shaving. The episode actually lasted about 5mins however it took my wife a couple of minutes to get my tablet up and running and start recording.

3. The urge to move the legs and any accompanying unpleasant sensations are partially or totally relieved by movement, such as walking or stretching, at least as long as the activity continues. 3

Actually in the video when I sat down the stomping stopped and as soon as I got up it started again. It's the same if it starts while shopping. I'll be walking along and all of a sudden I'll have to start stomping my feet.

4. The urge to move the legs and any accompanying unpleasant sensations during rest or inactivity only occur or are worse in the evening or night than during the day.4

It happens no matter what time of day it is or what I'm doing. Whether I'm home in the kitchen making lunch or at the grocery store.

Actually I live about 200 miles N of Houston. I went down there for my appointment with the Baylor College of Medicine because as I said earlier my VA neurologist has given up on me and the Movement Disorder specialist I saw in Georgetown, Tx referred me down there for a 2nd opinion. Looking again at the diagnosis that the doctor down there sent to my VA PCP it said - diagnosis: atypical restless leg syndrome vs. psychogenic movement disorder. The doctor down there sent a prescription for Gabapentin to my VA PCP stating this - Gabapentin 300 mg PO TID to minimize the urge and the premonitory sensory symptoms. (I only found this today since I got Gabapentin in the mail from the VA and was wondering why since it's not any of the normal medications I take).

I have an appointment at the Houston VA - Parkinson’s Disease Research, Education and Clinical Centers next month and a few days later at the University of Texas, Medical Branch Movement Disorder clinic.

In my wife's and my opinion so far all the doctors I've been seeing are just guessing at what I have and it's so very frustrating because not a single one can give me a definitive diagnosis.

Rustsmith
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Re: Not sure if this is RLS or not

Postby Rustsmith » Tue Jan 16, 2018 10:25 pm

The gabapentin prescription is also one that is consistent with a new diagnosis of RLS, although it is also used for a wide variety of other neurological conditions (I originally started it for migraine prevention). So, I hope that it works even though your diagnosis is probably not RLS.

I also wish you luck with the Houston VA and UTMB movement disorder groups. Hopefully you will see someone at one of them with enough experience to have an idea of what it is, or how to find out.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

capot1948
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Re: Not sure if this is RLS or not

Postby capot1948 » Tue Jan 16, 2018 10:58 pm

I agree Steve, it's more than likely not RLS. I'm hoping also that I can get a correct diagnosis as I'm about at my wits end with this.

sleepdancer2
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Re: Not sure if this is RLS or not

Postby sleepdancer2 » Sun Jan 21, 2018 5:40 am

My first thought is to wonder if you are on any meds that this could be a side effect of. And if you've had any blood tests to see if you have any deficiencies in anything pertinent to muscle and/or nerve function.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

capot1948
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Re: Not sure if this is RLS or not

Postby capot1948 » Sun Jan 21, 2018 2:27 pm

At the time this started I was only taking AMLODIPINE, ALBUTEROL and BUDESONIDE 80/FORMOTER. I would have hoped that if any of these would be causing this that my VA Neurologist or any of the other specialists I've seen would have alerted to it. As far as blood tests I get a complete workup every 6 months at the VA and the only thing that my VA PCP tells me about that is I have anemia but it's controlled she says. Not sure what I'll do if no headway is made after my visit to the Houston VA PADRECC and the UTMB movement disorder specialist next month.

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Re: Not sure if this is RLS or not

Postby Polar Bear » Sun Jan 21, 2018 2:39 pm

Just as a 'by the by' I wonder if it would be worthwhile getting your ferritin serum level checked.

It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. As it is very relevant to us, there's also a possibility it could pertain to other conditions.

As RLS sufferers we need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. It is possible to be low in ferritin even if our normal bloodworks are normal. You note that you have 'controlled' anaemia.

If you decide to ask for this blood test then, when getting the results, please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… those of us with RLS need to be up around 100.

It's just a thought.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

capot1948
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Re: Not sure if this is RLS or not

Postby capot1948 » Sun Jan 21, 2018 9:23 pm

Thanks for the reply. I had my Ferritin level tested last year in Feb - FERRITIN 217 , here's what it was 13 Nov 2015 - FERRITIN 301 High ng/mL (30-300) so I'll have to assume that's pretty good? I've also had these done:

IRON +TIBC
VITAMIN B12
COPPER, SERUM
CERULOPLASMIN
VITAMIN E
TSH (3RD GENERATION)
ZINC

Polar Bear
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Re: Not sure if this is RLS or not

Postby Polar Bear » Mon Jan 22, 2018 4:17 pm

Great Ferritin :)
Betty
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capot1948
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Re: Not sure if this is RLS or not

Postby capot1948 » Mon Jan 22, 2018 10:51 pm

That's what I thought to when I looked at the min-max levels. I'm hoping I can find something out next month when I go to the Houston VA PADRECC (Parkinson’s Disease Research, Education and Clinical Centers) they also are involved in Movement Disorders.

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Re: Not sure if this is RLS or not

Postby badnights » Thu Jan 25, 2018 7:30 am

When you see any new doctors, be sure to describe all your symptoms over again - don;t assume the symptoms were communicated correctly from the old doctors. I noticed that your doctor stated the purpose of the gabapentin to include "... the premonitory sensory symptoms", but you say you don't have any sensory symptoms, just the urge to move. So something was misunderstood.

I know how comforting a diagnosis would be - just to be able to put a name to it, to know that it's a known problem gives hope of a solution; but getting a diagnosis might not be as important as learning how to minimize it, such as trying to figure out what you can do to reduce the number of episodes or reduce their intensity or duration; and learning how best to live with it, like planning your day so that you're not caught unawares in a way that endangers you, or making use of the fact that you can sit down to stop it by planning to sit down as soon as an attack starts. Will it last a shorter time if you sit down? try to learn that sort of thing.

Read up on non-pharmaceutical approaches to neurological disorders. Are there diets that help damaged neurons heal? are there diets that can stall neurological diseases?

You need to find as many answers on your own as possible, and your wife can be an ally in this effort. If one of the new doctors can determine what is happening, great - - - if not, you must still ask that doctor for his recommendations on how you can manage your situation and if there's any lifestyle changes he would recommend. Be specific about what you want his advice for, because you have a lot going on.

I hope with all my heart you find a solution.
Beth - Wishing you a restful sleep tonight
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capot1948
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Re: Not sure if this is RLS or not

Postby capot1948 » Fri Jan 26, 2018 5:07 pm

I always take a DVD with my dancing videos and a DVD with my MRI/CT scans that were done at the VA with me. I make it a point to tell all doctors at the very beginning that I don't have vertigo or dizziness. Each time they would say something about vertigo or dizziness I correct them. I'll be going on 5yrs with the balance loss with not a single real diagnosis being found and the dancing is coming up on a year now. In the video I posted you can see that as soon as I sat down the 'dancing' stopped but as soon as I stood up it started again. The bad thing is that I'm beginning to run out of doctors/specialists to see here in Texas. I'm hoping that something will come of my visit to the VA in Houston next month.

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Re: Not sure if this is RLS or not

Postby ViewsAskew » Fri Jan 26, 2018 11:54 pm

There is an excellent book - written at least ten years ago - called How Doctors Think. In one of the early chapters, the author talks about a patient who's been diagnosed with an eating disorder, but who keeps wasting away. It is eye-opening about how important it is to A) NOT provide prior tests and diagnoses when you see a new doc (it preconditions them to assume the original or past work done/diagnosis was accurate, correct, right, etc), and B) leave any doc immediately when he/she gives up on you as well as find a doc who either gets it or will keep working on it until he/she does. Doctors like to solve the problem and when they feel they have no other ideas, they do not like it, so they basically ignore you.

Good luck with the next appointment. Hope they can get to the bottom of it.

Oh - not that I am a doctor, but orthostatic myoclonus was my first thought - a relative had it. I don't know anything about it, other than it can involve foot stomping, however!
Ann - Take what you need, leave the rest

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