I haven't posted here for some long time as I have always felt that I did not have RLS. See the neurologist every 6 months and saw him yesterday again. Have had lots of tests over the last 3 years, 2 nerve conduction studies, blood tests, MRI on back and untrasound on foot etc etc which all come back normal. My ferritin levels are high about 300, thats because I have to take daily medication as I do not absorb iron very well.
I feel I do not fit the criteria of RLS and asked the neuro if he would confirm that I did not have it but it he sort of said there are allsorts of variations.
At the beginning ( and before I knew about augmentation) I was perscribed the Dopermine type drugs but they made me virtually collapse on one dose, I am very sensative to lots of medications and so was put on Gabapentin. Worked up to highest dose which had no effect except to make me feel very woozy. He did perscribe Amytriptaline but I read that it could make the condition worse so did not take it.
Yesterday he prescribed Pregabalin, not sure if you can augment on that?
At the end of the short appt ( he does not give much time for discussion as like to keep to time) he asked me what I would like him to do for me. I thought I was there for the opposite reason - for him to help me. I have given him all the information below but he will not rule out RLS.
My condition is not serious compared to some many folk who suffer, the pain is just in one foot, specifically in the 2/3/4th toes. I have pain all day and once I am laying down it gradually goes and I sleep without problems. If I sit up in bed the pain returns so it must be connected to being in a prone position.
When I wear shoes it makes it worse unless the shoes are wide, like clogs. Also sitting, not the sitting itself but the fact that the back of my thighs are pressed into a seat. Worse if sitting in a car because the angle makes the pressure harder.
I am convinced it is nerve related but he says he has done all the tests and nothing is showing up so there are no other tests to do.
So just thought I would update on my condition - whatever it is - and some advice on Pregabalin would be useful.
Hi there. I'm on your side. What you describe is NOT RLS.
There are 4 main criteria for a diagnosis of RLS.
1. You get a creepy sensation and an urge to move in your legs
2. The sensation and urge get worse when you relax or try to sleep.
3. They stop or lessen when you move.
4. They occur mainly in the evening
Your "neurologist" doesn't appear to know these criteria. You have to have them ALL to get a diagnosis.
There is a fifth criteria that everything else that could explain the symptoms is eliminated.
Tell me if I'm wrong, but from what you say, you do NOT get the creepy sensations and the urge to move. You do NOT get the symptoms just when you stay still and they go when you move. They can occur at any time.
RLS does not depend on your position.
If I'm right, you have NONE of the symptoms of RLS.
If you want the "official" version of this, follow this link
There are variations in people's experience of RLS, but there definitely isn't a variation where you have none of the symptoms.
I can understand that your neurologist has done lots of tests and found nothing. However, he/she should have the humility to admit they dont know what it is!
I am feeling very angry on your behalf. You might wish to print out the information from the IRLSSG and post it to him/ her.
This, I'm sorry, puts you in a difficult position, but there is no point in seeing that neurologist again. There's also probably no point in making a complaint as the tests were all negative. It would be difficult to demonstrate that he/she made a misdiagnosis unless you can get another specialist to confirm you do NOT have RLS.
A regards to what your problem really is, I can only offer a personal opinion based only on my own experience, i.e. it sounds to me that you may have a nerve problem.
Pregabalin is to put it simplistically, a "nerve" drug. It is used to treat epileptic seizures, nerve pain and - RLS.
If it works for your foot pain, since you don't have RLS, then the pain may be nerve pain.
I hope this helps
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Thank you for you input. I have had tests for Mortons Neuroma and have been told that I do not have it/one.
The problem is that if I choose not to see him again then it counts as a self discharge and I will not be offered another appointment.
The other reason I feel it may be 'nerve. based is that when I get up and start walking, I initially get this vague sensation in both feel in exactly the same place on my toes. Very quickly the right foot develops into the usual pain but my left foot just stays as it is, a very vague sensation., barely there at all.
That indicates to me that the 'nerve' problem may be my back/spine but again tests have proved negative.
I do have alot of wear and tear as they say, on my spine, I am 76 so maybe expected! I also have a scoliosis on the right side of my lower back which I felt was probably connected to my problem. Again all test regarding any kind of nerve compression have come back normal.
Its difficult but if I was told that its unfortunately age/scoliosis related I could accept it. Being told I have a condition that is incorrect and put on my record I feel is not acceptable but as you say - in a difficult position.
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Yes of course, if you're given an appointment and you refuse it it can be counted as a self discharge. However, are you given appointments on a regular basis?
It just seems there is no point to seeing someone who can't give you a diagnosis and only gives a misdiagnosis. From your description it sounds like the neurologist I saw years ago.
I can only say that your symptoms do NOT indicate RLS, but they DO fit the description of Mortons Neuroma. You can see this yourself.
If it's the same person that told you, you have RLS, that told you, you don't have Mortons Neuroma how much do you believe them.
It doesn't sound spinal.
It depends what you want to do, if you're OK to accept that you're going to have this pain in your foot then you don't have to do anything.
You could discuss this with the hospital Patient Advice and Liaison Service (PALS). There are also, depending where you live, independent advocacy services.
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Thank you Manverva for all our input and advise. I will mull it all over and then decide what or where to go next. I dosee him him every 6 months and will decide on a course of action before I see him again in the Spring.
Thank you again as you have reminded me that sometimes our gut reaction is often more accurate as we know our own bodies.
It might be worth going to a GOOD pysiotherapist. I had a session a while back and found that she helped with the problem with just a few excercises. Since then I have tried to move all my joints through their full range at least five times a day, Of course I am not suggesting that your problem can be solved so easily but a bit more flexibility might help. Just simple things like turning my head, bending backwards while lying on my stomach and moving my limbs in all directions. I'm trying to learn to sit cross legged but my knees wont allow it just yet. I could do it when I was 10 years old so why not at 73? I'm sure I feel better and I am thinking yoga for mature people might be a good idea. I spent a few weeks in Korea and one thing I noticed was that almost all the locals slip into a crossed leg position so easily. I'm sure our body just forgets to stretch itself out after a few years of sitting at an office desk. Use it or lose it they say.
Thank you Graham for your input. I have had - over the years, lots of physio but with regards to my foot it makes no difference. I do take your point about staying as flexible as possible though.
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You could find a physiotherapist or osteopath that also. does acupuncture. I have had some good results from the latter.
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Hi again
I have had a course of acupuncture and it made no difference. I go to a very good podiatrist who has ruled out Morton's Neuroma, also have had an untrasound which also confirmed that I did not have one.
Thank you for taking the time to suggest alternatives, its appreciated.
There is one thing that I would like to solve even if there is no cure, I wonder why I get the exact same feeling in both feet/toes right at the beginning of the day? The left foot sensation is very small but the right goes onto full blown pain/sensation for the rest of the day. No one seems to be able to get to grips with that.
The other question I have is - can Prebagalin cause augmentation eventually, cannot seem to find an answer to that.
Thank you again .
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The "gabapentinoids", i.e. Gabapentin or Pregabalin do not cause augmentation.
If the Pregabalin works for your foot pain, then you don't have to worry about that particular problem which is usually due to dopaminergic medications. There are other side effects however, that you should be aware of. I take Gabapentin which is more or less the same. These side effects vary in intensity significantly between individuals. You need to watch your weight and it can affect balance. I have a tendency to fall over and bump into things.
If it does work, it does more or less confirm that it's form of neuropathy.
If not, I presume that you have been examined for circulatory problems.
Otherwise, it does remain a mystery, I'm sorry.
From all that you've written, it remains evident that you don't have RLS. The criteria for this are quite clear. It is true that one of the criteria is that all other explanations are excluded, but it doesn't follow that if no explanation can be found then it MUST be RLS. There are four other criteria which identify the symptoms and you don't have the symptoms.
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Many thanks. I will now wait for the perscription and then see if it works for me. You have been most helpful and confirmed what I have felt about my diganosis, its great to speak to people who really know what they are talking about.
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I don't know what dose you've been prescribed, but you need to start on a low dose then build it up. You may get some side effects that may fade after a few weeks. Dizziness and sleepiness may be the worst.
Also don't expect it to work immediately, it may, again, take a few weeks.
So if you get moderate side effects and it doesn' t appear to be working, don't give up on it immediately.
Obviously, if you get major side effects or even after weeks, it's not working, then it's no good for you.
Good luck.
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Hello again. Today I received a letter from the neurologist and very interesting it was too.
He has said that I 'continue' to get dysesthesia...... he has never mentioned this to me and had to look it up to find the meaning.
As I understand it that is peripheral neuropathy which I thought was different to RLS. If so then I do not have RLS but maybe they are linked. He hasn't given a doseage as he has sent the request to my GP to decide that and my GP practice has to foot the bill as well.
No need to reply unless you wish to, just giving you the information from his letter.
I will remember your advice regarding the medication and not give up too soon.
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Oh dear!
It doesn't sound to me, from your description, like you have dysesthesia either! Does your foot hurt when you touch it?
Best to let that go.
SOME forms of neuropathy and RLS are "related" in that some forms of neuropathy can lead to RLS symptoms. In this case it is called "secondary" RLS.
Nerve damage however and RLS, certainly "primary" RLS are totally different .
It doesn't appear then that the neurologist did say you have RLS, which is better, since you don't.
If he was just saying you have a neuropathy, he may not be wrong. It may not be necessary to know the cause of it.
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