I need see advice as my doctors are not sure what is going on with me, including the neurologist.
At night just before I go to sleep I get these waves of pins and needles or electricity through my nerves that hurt really bad. It causes me to basically jump.
It is in my feet and particularly in my hands. It's really bad in my fingers
It has only started happening and only really happened right before I sleep.
I am on no medications, my ferritin iron is high (117), I do not have diabetes.
Does this sound like restless leg syndrome?
Thanks
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ollie6
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To comment further on the waves, the sensation begins and then moves through the foot or finger and then sort of disappears. It will repeat again maybe ten tmes before I get to sleep. It really hurts. I do sometimes jump my legs from the pain or rub my fingers
It sort of feels like it's stabbing, it's very painful so I do find myself moving while it is occuring but when it's not as painful i just let the wave move through me. I feel like it's my nerves lighting up. I occasionally get the same sensation in the side of my head near my jaw.
I should say when it starts, I get the sensation in my fingers and jaw and sometimes back as well all at the same time. It's like all the major nerves in my body get irritated at the same time at night. Does anyone know what could cause this or is it RLS?
Reading this comment where you say when it is not as painful you just let the waves move through you, that does not sound like RLS. It woukd be almost impossible not to move. Hope that helps
This doesn't really help that much as many things could cause a need to move the legs due to sensations. Like sciatica, you can't really stay still during an attack.
When the sensations come on in bed at night do you have to get out of bed and walk about? Do you find yourself pacing the floors often for hours on end as you simply can't bear to keep still? Is the thought of not being able to get up and walk around just too awful to imagine? Is the urge to move so overwhelming that you cannot possibly resist it? !Is the urge to move the main symptom you wouldtell a doctor if you had to describe your problem in a few words?
Nah not at all. I would say the main sensations is stabbing pain which causes a jolt through my body. Particularly through my fingers. It's pain. It really hurts
hello I was going to say maybe its restless legs syndrome but pippins 2 has requested that the criteria for rls be posted but you said there was a reply from you telling pippins 2 that her comments didnt help -so unsure what to say-except maybe reach out to your local gp & get a referral to the neurologist
I didn't mean to sound rude I just meant that lots of conditions could cause the need to move your legs during night which makes the diagnosis difficult relying on those conditions. For example when I would get muscle spasms in my legs there was no way I would stay still and walking helped but that's not rls
Dear ollie6, I suffer stabbing pain from time to time . I get it mostly in upper leg but it can occur anywhere. It is like someone was sticking a sharp instrument into my leg. It only
lasts a second or two but keeps recurring every 12 - 15 seconds. I massage the area although I don’t know if this helps. It usually passes in a minute or two but sometimes longer and the stabbing pain is very sharp and upsetting. I don’t get “waves”. I have slight neuropathy in my left foot (I think from spinal trouble). I don’t know what the stabbing sensation is but I feel that with RLS the nervous system is messed up and so I have not even mentioned this to my GP as I don’t feel there is much to be done. I hope you get an explanation. Take care in the meantime.
I have quite some trouble with my feet, constant tiny muscle twitches and pins and needles but they do not hurt as much as the stabbing.
My left calf now feels so so tight and throbbing, almost as if it has its own heart beat. I was concerned about a stroke but it's been like this for months now. It happens 24/7. From the criteria it would seem that if my symptoms are 247 it doesn't fit RLS?
Jelbea could you help me by describing what RLS feels like compared to neuropayin your feet to help me work out what it is?
My doctor said I was too young and showed no symptoms of either RLS or neuropathy but unfortunately I know my legs used to feel normal and now they don't
You don’t say how old you are. I can be excused for having some neuropathy in my feet as I am 77 with spinal trouble for years. The neuropathy affects three toes with a pins and needles feeling. It does not bother me during the day but every evening it is a burning pain but quite bearable at present. Are you very anxious at present. Sometimes muscle twitches and pains like this can be made much worse by worry and anxiety..Do see your doctor soon to try and get a diagnosis.
Dear ollie6, the reason I asked about anxiety was because I went through something similar. The trouble is that it starts with some symptoms like you have been suffering and the more you think about these and worry, the more severe they become. I became worse and the symptoms got more marked and eventually I thought I had something terrible wrong with me. fortunately I found out about the anxiety making things worse and I was able to accept the fact that I had to ease up. It took some time but every time I felt the twitching, etc I tried some deep breaths and did something to stop myself worrying.
I am not saying this is what you have but it certainly does not seem to be RLS and I don’t think it’s neuropathy.
Talk to your doctor again. He might even refer you to someone to talk to who would help you to sort this out. Good wishes for 2020.
Thank you so much. Occasionally I think the tightness in my calf comes from being so tense all day long and squeezing and squeezing. I must admit once I found out about the condition RLS my anxiety went through the freaking roof and then all the sensations in my legs went through the roof. I have quite severe muscle twitching and it doesn't seem to get much worse after I have my panic attacks
I think you are on the right track. One of my symptoms was muscle twitching in the calves of my legs and as you say constantly tightening the muscles probably makes it all worse. There is a feeling of muscle twitching called fasciculation. This is a rather grand title but just means like little crampy feelings which can go on for a while. They are not harmful and anyone can get them. The trouble is that if you feel something like this and you become worried about it, it then seems much worse. You have got to try to take your mind off it because the more uptight you get the more widespread it all becomes. Do talk to your doctor again and ask for help.
If your GP is not helping then I think you should go to A and E at your nearest hospital and tell them how you feel. I can assure you that you will get this sorted but don’t delay any longer and tell the doctor what you have told us. They will help you.
Thanks everyone. It's really annoying. If I'm relaxing it's like all I can think about is my blood left leg. It's throbbing and even when it's not throbbing it's just on my brain. I don't know how to stop thinking about it and just relax. I feel crazy. Every minute of the freaking day I have the leg on my mind. It's stupid but I can't break the cycle
The wife’s gone to bed , I can hardly keep my eyes open, but if I dare close them it’s as if some malicious invisible tormentor is waiting to introduce a chemical into my blood stream that brings me shuddering back to consciousness, time and time again.
Oh goodness, I don't know I feel like mine is more like someone is squeezing my calf and sticking needles into my feet. But it's all day. Infact going to sleep is the only thing I look forward to because then I don't have to feel it until the next morning
I agree. It'll be a fight to get another referral. My doctor is not very understanding and they have all my blood test records etc so going to another surgery will be a challenge
Why not change your GP?? Your GP should feel ashamed of themselves for failing to diagnose and cure your aliment. Its ridiculous to berate you for returning after every failed attempt on the GPs part. Of course they can't always fix your problem but they should be apologising rather than grumbling and then searching for a specialist who can diagnose your condition. Surely any records held by your existing GP must be handed over to the new one. They are YOUR records. Always get copies of any pathology reports and ask any specialist to send their report to both your GPs. It sounds like the UK system really sucks if you are unfortunate enough to be a patient.
There are several reasons why I said don't change your surgery.
Firstly with the greatest respect to Olly, we've never met. I've known very intelligent people get the wrong end of the stick. You and I were not there when these events took place, so we should be careful in our recommendations, lest we make his situation worse.
Secondly, you and I have no idea where Olly lives, how far he would have to travel to a new surgery, or wether these surgeries are prepared to take on new patients at the moment.
Thirdly, Olly wants this condition diagnosed and treated ASAP. He could always change surgeries at a later date.
Right now, I would suggest that the fastest, least stressful path would be to just insist on seeing a different consultant.
You're right in your reply to Ollie6 about being entitled to a second opinion. This is something we can insist on. I don't think Graham 3196's suggestion would be wise as Ollie6 would have a terrible time trying to transfer to another surgery which could make his wait could be even longer before he got referred to another neurologist for a second opinion.
I'd go along with your suggestion to for him to keep insisting that the GP gets a request in progress.
GPs don't know everything about all health problems, but some don't have the gumption to admit it.
Apologies to you Ollie6, I didn't mean to be rude by referring to you in the 3rd person.
I would estimate that half the contributors to this forum have had a significant fraction of their lives ruined by useless GPs who misdiagnosed them or knew nothing about treatments available or, worse, got them hooked on really bad drugs. We have to protect ourselves from these people and the only way I know is to ask a different doctor. If your doctor goes crook at you for coming back because you are still sick what do you do?
Going to hospital emergency is about the best alternative. They might not be able to treat you but they could still be willing to refer you to one of their in house specialists. I did just that with a daughter and we were eventually treated by a specialist who was quite open about not knowing what was wrong and calling up his associates for support. I suggest a big teaching hospital because that was where I had success, partly because they had a diverse range of specialists to call on.
How difficult is it for you to change the GP? Is your current GP in a practice with others? Most GPs in Australia work for larger practices so you can have continuity even if you ask for a different GP.
Can you get another person to go with you to the GP? Its difficult to stare down a GP and (ever so politely) demand that the doctor gives you a second referral immediately. Remember that the GP is there to provide you with a service that includes referring you to specialists when the GP can't provide the advice you obviously need.
Incidentally I have found that female GPs are more willing to refer than males. Of course my sample is very small but I wonder if females are less concerned about admitting they are out of ideas and calling for help.
The doctor has basically said I get a spinal tap or I go home last time I went to her. I don't believe I need a spinal tap, I need someone who will be able to help with my symptoms. It's actually making me afraid to go back as I don't want a spinal tap. I get migraines and opening myself up to more horrific headaches for no reason is not something I'm willing to go through at this stage.
I have been put on mirapex for a trial and it didn't help. It made me really really tired but that was the only real change I did notice in my symptoms. It also kept me awake which was weird, it was really hard to get to sleep and very disrupted but causes a lot of tiredness.
Having read your letter I tend to agree with Pippin 2, that it is not restless. Factors that such as occurrence tending to be just as you go to bed, might seem to indicate that it's restless legs. However, as you say you can choose whether or not to move when the sensation arises would indicate to me that your condition is probably not restless legs. When the sensation arises and they start to move you would find yourself needing to get out of bed for a while.
I agree with other members who say that you need to get a second opinion. It is a difficult thing to diagnose because of the countless ways it presents with all of us.
Has the neurologist said anything about how he/she has concluded that it is not restless legs? I've read about several people who have been referred to a neurologist where it seems that the patient ends up teaching the Consultant!
(If we do that we ought to get paid for it!!)
There are some neurologists who do have knowledge about RLS but unfortunately they are few and far between. But your GP should try and get another specialist to assess your situation.
Hi. Ollie, sorry for not picking this up ealier,
I can confirm what many others have said, you don't have RLS.
It doesn't really help for us, no matter how helpful it might seem to conjecture on what you might actually be experiencing.
Your symptoms do have features of neuropathy and/or anxiety.
This suggests it might be something called "functional neuropathy", but really you need to persuade a doctor to carry out a few tests to eliminate all possible physical causes of neuropathy, including a thorough physical neurological examination, possibly nerve conduction tests or even an MRI of your spine.
Hi Manerva, the doctors have let me down which is why I'm hear trying to work out what's happening from others.
Last night I couldn't sleep until midnight. The pain from the tingling in my legs was keeping me awake. I just layed in bed for hours. Now that I'm awake from morning it's still as bad. It hurts.
If it were RLS would I expect to have the symptoms every minute of the day? For months.
I'm really sorry I can't help with your predicament.
I can only repeat, you do not have RLS, your symptoms, as you describe them. do not fit the usual descriptions of RLS. They also clearly don't match the 5 RLS diagnostic criteria. Your symptoms don't respond to RLS treatment.
I cannot say however what is causing your symptoms. I can only suggest that you find courage to keep going back to doctors and accept whatever tests they suggest. Having a "spinal tap" shouldn't be seen as a threat, it's a routine test for investigating possible neurological disorders
This site can't really help as the expertise of its members is RLS, so all you may possibly get is some misguidance from those who assume you have RLS, (when you don't) and confirmation that you don't from those that see you don't.
I do believe that you do genuinely have some disorder with some neurogenic or psychogenic basis to it. If doctors are struggling to identify it this may be partly because they lack experience of whatever it is and/or can't find any physical signs of anything, only know your symptoms.
RLS is diagnosed only by its "symptoms" (subjective descriptions), there are no "signs" (which can be observed or detected). I think this sometimes leads doctors to diagnose RLS simply because symptoms are vaguely neurological but there are NO signs. They should still consider the 5 criteria because there are other syndromes that have no observable signs.
The only other condition that I can think of that you might consider exploring is FND which is quite rare
What kind of Dr would I need to see about FND? I went to two neurologists, one said RLS and the other just said it would improve with time so neither considered FND? I thought a neurologist would be the person for FND?
I cannot say you have FND, I suggest your find an FND organisation, a lot of conditions have national associations that deal with them.
Contact them to find out more and get advice.
A neurologist would be most appropriate but you have to be aware that FND is rare and neurologists have to deal with a lot of different conditions some of them life threatening, RLS is low down on their awareness horizon and FND possibly lower.
They're not omniscient and they are most expert with the conditions they most commonly come across that have physical SIGNS that can be picked up on tests. FND. (and RLS) have no signs.
I'm afraid you may have a bit of a fight on your hands to get an accurate diagnosis. You just have to keep going back to them. I advise taking someone with you for moral support.
In the meantime, I suggest seeing a counsellor. Undertaking "Talking therapy" with a trained professional can help identify if there's any psychological element to your symptoms OR confirm there isn't. It might also help you to cope with your symptoms.
If you've already been referred to two neurologists and just asked to be referred to another, I can understand that your GP might consider this unnecessary and this might be their motivation for what they say.
However, if they actually said you were "doctor shopping" then, at a minimum, this is disrespectful and if I were you, I would feel patronised.
I suggest you go to your local Citizen's Advice Bureaua and ask for their advice.
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please help 
Help please
help/advice please !
Please help.. do I have RLS?
Enough is enough. 
