It definitely needs a second opinion from a neurologist. RLS mainly occurs at night or resting and it causes an irresistible urge to move. The feelings are totally relieved by moving. It affects ability to sleep because when you lie down it starts up and you are then unable to sleep.
I agree with previous responses to your other posts.
You will not find the answer to what your condition is on here and you definitely need to see a movement disorder neurologist at a major teaching hospital.
If in UK as for a referral to another neurologist, as the one you have seen doesn’t sound very knowledgeable- he says you have RLS but it really doesn’t seem that you do.
My RLS - came out of the blue so to speak, and it was severe. Daytime was indeed in my arms and legs with a tremor in my hands. I really thought I had Parkinson's. Prior to the RLS I had severe muscle cramps and twitches, eyes and lips also. I spent months researching what I had - docs were no help - I had to tell them I had RLS. I believe the muscle cramps and twitches and the RLS are related - but not to each other. Something caused the electrolyte imbalances leading to the muscle cramps and low iron contributed to the RLS. Ferrous bisglycinate totally cut into the RLS symptoms. Lots of adrenal cocktail (1/4 tsp sea salt, 1/4 tsp cream of tartar - for potassium, mixed in juice) and electrolytes helped with the muscle twitches and cramps. I'm left with insomnia.
I used an oral ferrous bis-glycinate chelate - over the counter. There is also a patch available from PatchMD - also over the counter. You should get a blood test for ferritin levels before you start.
You have exactly what I have and you have the same ideas!
Unbelievable that doctors can't help you...
I tried kinine drinks...and compressing stocking that is helping me a lot at this moment...
And sometimes a Codeine -tablet before going to sleep.
Sometimes I need to stretch a lot...my arms-legs-eyebrow lifts it's like it jumps everywhere...
The numbness in my foot is my biggest problem and the shaking in my hands. (after movement ,no rest tremor)
Also a lot of stiffness in neck and shoulder pain.
Thanks for you info!
It's not at all clear that your problems are due to RLS. In some respects this sound like Motor Neurone Disease except you wouldn't get tingling and numbness. So it might not even be a neurological disorder at all.
Also as you previously stated your potassium levels are high, it wouldn't be wise to add more potassium in your diet.
I understand that it's not easy and may be expensive to see a doctor to get a proper diagnosis of your condition, but I think that's really what you need to do.
You are identifying a range of conditions that you are guessing might explain your symptoms, none of which are RLS. If you wish to confirm which of these conditions (or any other) is right, then you need to have appropriate medical investigations.
Nobody in this community can offer you a diagnosis and in trying to help you, without having a complete picture of your condition, or sufficient insight into what it might be, may be giving you information that isn't relevant or may be harmful.
As Jools says, you will not find your answer on here and I suggest that, as a way forward, you need to discuss this with a General Practitioner (GP) which specialist it would be best to see. I read that you do have GPs in Belgium. If you have to pay, this would be a cheaper option than a specialist in the first instance.
It's up to your GP, but it's possible that a kidney specialist would be more appropriate than a neurologist.
You have to weigh up the cost to your purse against the cost to your health.
Thanks for the reply but listen...I never go to a doctor until I am really sick...so the last
2 years I went to 10 specialists like neurology twice-muscle and heart doctor and a few others...endocrinology and gynaecologie etc...and I did tons a bloodtests-scan-mri-ctsan and you name it...so it is because I am hopeless that I am coming here for some information..Only thing I haven't don yet is another MRI of my spine and a kidney specialist...so thanks again for all your help and have a great day!
Sorry if my english language has any mistakes...
Sandy
For whatever reason, your muscles don't seem to be working properly. If this gets any worse, it could affect all your muscles including your ability to breath and your heart, which is a muscle.
I can't make it any clearer than that. I'm sorry if you're not understanding my English.
I have hyperthyroidism but apart from RLS I don't have any of those other symptoms you describe, they are not typical of hyperthyroidism.Fortunately it is quite easy to find out if you have hyperthyroidism by having a thyroid blood test which should include TSH, T3 and T4. You will then know for certain if thyroid is to blame x
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Is Moving leg syndrome RLS or is it something different?
Is it Primary RLS or Idiopathic Tramadol-induced RLS?
Help please
RLS OR NOT?
