Hi I am new here and live in Australia. I got diagnosed with restless leg syndrome 3 years ago, after hassling the doctored. I know I've had this for around 10years.
My question is after doing some research and taking a number of tests on the internet, I'm confident I've got Parkinson's disease as well. I had 12 out of the 15. I've had a brain scan which apparently showed damage. Not knowing anymore.
Also, I was a police officer and discharged 6 years ago. I've been diagnosed with complex PTSD. I can't take any medication because it does not work on me. I've been through hell and back and don't know what to do. Has anyone go advise or that. By the way I'm 45years old too
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Craig09
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Hi Craig, welcome to the forum. You'll find lots of good ideas and advice here. I'm relatively new to the forum this year myself so wouldn't feel confident giving any advice but a lot of the other members- who seem to be in bed at present in the northern hemisphere, will certainly be able to help! I too an in Australia and you will no doubt find like I have that we're just as behind as the rest of the world when it comes to RL. My only suggestion to you is beware of diagnosing yourself using the internet! I'm not saying you don't have Parkinson's but don't cross the bridge until you get a definitive diagnoses from a specialist movement neurologist. I have seen a neurologist who comes over from Melbourne to consult here and he's apparently very knowledgeable about Parkinson's. I'm not so sure about his knowledge of RL though. Good luck and I shall look forward to seeing what the others say about your post.
Thanks heaps yes your right about the internet. My RL is bad at times and still don't sleep to well. After I had the brain scan the doctors were unsure as to Parkinson's and told me that it's possible. I have appointment tomo6anyway so will discuss further.
I'm awake now! As restlessstoz says don't diagnose yourself. There is some overlap of symptoms between RLS and Parkinsons so on symptoms alone it may not be clear.
I think it unlikely that a brain scan will show Parkinsons. Brain damage however may possibly cause Parkinson like symptoms.
Wait until you've seen the doctor again.
There are also a couple of Parkinsons communities on Healthunlocked which you could visit.
Minerva, seen doctor again this afternoon and we spoke about it in length. He told me that it's highly possible, but wants to monitor things for a few months before jumping into more tests as I've been threw a lot over the past 9 years.
Sounds like a good plan. In view of the functional and neurological problems you've had it's a very cloudy picture and any more stress may exacerbate things.
Incidentally, you don't mention it but are you on any medication for RLS? The reason I ask is, as you may already know, one of the standard treatments for RLS is a dopamine agonist, (DA) , and is the same treatment for Parkinsons. If you're taking a DA and it relieves the symptoms you think are Parkinsons then that makes it more likely.
How is the Sifrol working, but I guess if you're still suffering, it's not. So sorry for you. I've been on it for many years and have found it to be a miracle worker.
Im really over it trying to do right things. Have lost weight however, part of that is the fact I can't swallow properly and have to have water every mouthful to help swallow. Just sitting tends to be a problem as my legs begin to ache and painful and body stiffens up, so I keep moving. Anyway just got to deal with it.
Hello do you have a rls foundation where you live you should start there there are a lot of meds that can help you or if you plan to travel to the us you can visit a rls specialist here the rls foundation has a list of doctors in the US but maybe your area to the site is very good I’ve learn a lot about my rls here just make sure the don’t start you on dopamine I’m currently trying to get of that medication to a different type good luck and be strong
There doesn't apoear to be the equivalent of the US RLS foundation in Australia. There is information on RLS from various organsiations such as Sleep Disorders Australia, The Brain Foundatiion and RACGP but no dedicated RLS orgs.
However, Craig, if you haven't already come across it there is an org for Parkinson's Disease
Rls and Parkinsons would suggest to me that something is causing neurological damage. When the body gets damaged it causes inflammation. One possible cause is your diet. Inflammatory foods are sugar, nightshades (potatoes, chilies, aubergines etc) grains like wheat food additives like sorbates. Try avoiding sugar, biscuits, bread and cakes for a month to see if that has any effect. Margarine and 'wet' foods tend to contain sorbates (additive 202 usually) so avoid those. Glutamate is a neurotransmitter, and affects some people. If you see an improvement, you can try testing yourself with one type of food at a time after a couple of months, and seeing whether you react. If you don't then there's probably no need to keep avoiding it.
Eryl, I have got neurological damage which was identified 5 years ago by one of a few of my doctors. It was stated to me that it was caused as a result of my PTSD. Scans were done and showed this. My Forensic psychiatrist organised it and he and another doctor identified it. I've clearly had bad luck over the past 9 years. Just last year, it was identified I had been walking around with a crack in my neck. So had spinal surgery last year and now have a plate and screws in my neck.
Diet may have been contributing to the ptsd, as it can cause anxiety and depression issues. Check out 'our descent into madness' by Georgia Ede on youtube.
By its very definition Post Traumatic Stress Disorder is a 'stress' response which occurs 'after' (post) a 'traumatic' event. it seems unlikely that diet has anything to do with it because the person suffeting PTSD can say what the traumatic event was and that they didn't suffer it before the event.
Whereas I can accept that diet is a factor in quite a few things it doesn't explain everything.
I accept that diet is a fundamental factor which affects us in fundamental ways. They are however, fundamental, i.e. fundamental to our health and well being in general, no doubting that. There are however, many conditions that are not caused by bad diet and there are many conditions that can't be treated simply by a better diet.
I can think of lots of ways to deal with stress, resist it and prevent it building up into a spiral. None of them involve eating anything in particular
Sure someone suffereing PTSD for example needs to eat well enough to maintain their general health, but to suggest that they can treat their PTSD by diet alone is probably disrespectful.
I never suggested anything of the sort. What I'm saying is why ignore one of the tools in the box if it may help the other therapies? It may not, but it would be stupid to not even try it in case it might help.
I've been taking omega 3 capsules for almost 20 yrs for my hypertension. Now I'm suspecting that the hypertension was the early signs that my diet was wrong. These days I follow the principles of the Wahls Diet, and am feeling fitter than I have done for 25 yrs.
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RLS advice
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