Discussions By Condition: Leg conditions

Possible RLS/Arachnoiditis.....?

Posted In: Leg conditions 1 Replies
  • Posted By: psamiad35
  • October 9, 2011
  • 00:48 AM

I'm posting this regarding a friend......

Her symptoms fit RLS, but with other sympstoms as well which I've found to be listed as common with arachnoiditis (although this syndome/disease is apparently quite rare....) so was hoping to get some advice from some knowledgeable people out there.

Basic symptoms are very painful leg spasms which she says start as a dull ache/throb which builds quite quickly to a very painful spasm/twitch. This mainly happens in the evening/at night and severely affects her ability to sleep. Although she says if it comes on after she has fallen asleep of a night she finds that although the spasms/twitches will wake her each time she is able to fall asleep quite easily after each one. If they start before she initially falls asleep they are excrutiating and sleep is impossible until the symptoms subside. Perhaps the most worrying symptom that she has now let on about is complete numbness from the waist down. This has happened tonight but she has admitted to me that it has happened before. She has complete loss of feeling from the tips of her toes up to just under her tummy button. This evening this loss of sensation lasted just over 2 hours and was accompanied by short bouts of pins and needles in very specific areas (mainly genitals, but also a burning tingling sensation around the knees). During the periods of numbness there are no spasms and typically no pain.

Other general symptoms on a daily basis are fatigue, an undiagnosed depression, palpitations, she has experienced difficulty swallowing once of twice recently, headaches (she'll have a few days at a time where she is plagued by them), difficulty emptying here bladder.....

She is 27 years old, overweight, a smoker, doesnt drink, has a history of back problems and has been left bed bound on several occasions due to this, is a horse rider so has had numerous falls/injuries in the past, but currently leads a relatively sedentary lifestyle.

I've read that patients should go to the dr forearmed as they tend to assume disc problems (which she has been checked for previously with no evidence of any damage) and that in some circumstances this kind of mis-diagnosis and subsequent mis-treatment can make things a lot worse and cause more damage. SOOOOO this is our attempt at doing some research before she goes back again to try and get a better answer from them than she has before.

I thank in advance anyone thats feels they are able to give some advice, it will be gladly received and greatly appreciated. :)

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  • HiI found your post by accident, perhaps I can help? I'm not a medical professional but I have coped on my own with arachnoiditis for more than twenty years.Please bear in mind that what I am going to write is very simplistic but may help you think through any possibility of arachnoiditis.Try this -One cause of arachnoiditis originates from injection of an oil-based dye prior to apine injection, another comes from injury to the spine. Instead of concentrating on symptoms, think about injury (you said the person had many falls etc). Has she ever had an injury to the spine, either diagnosed or not diagnosed. Is there any possibility that an injury could have punctured the spinal cord ie caused blood or any infectious matter to have leaked into the spinal cord? If she has arachnoiditis because of this kind of injury and has had no specific clinical treatment such as an operation, the arachnoiditis inflammation will always remain at the site of the injury. It will affect nerve roots coming out of the spine where the injury is so a lumbar spine injury will affect nerves in the legs, a thoracic spine injury will affect nerves in the arms and chest. As well, the fluid from the injury will have dripped into the spinal fluid in the spinal canal and will get up into the brain, and as the fluid moves around the spinal canal, it may build up where there have been spinal injuries. It sounds horrific but you learn to cope, particular once you understand what is happening.If you want to discuss this further, you are welcome to email me w1chw1z@yahoo.co.uk and if I can give any more information, I will, as long as you are clear that I'm not qualified in any way to advise. One thing you need to know is that arachnoiditis is an iatronic or iatrogenic disease (look it up and you will find that means "caused by doctors or clinicians"), which is why I have mainly had to look after myself. I got it because I broke my back and neck in a car accident years ago, the doctor tried to cover up that another doctor moved a fracture, and didn't give me antibiotics, which would have ensured that I didn't get arachnoiditis. As you have found out for yourself, it is very rare. A diagnosis may be more likely if you can identify a possible cause, rather than focus on multiple apparently unrelated symptoms.Good luckPS Instead of taking her multiple symptoms to a GP (doctor), it may be a good idea if she were to go to someone like a chiropractor, who would x-ray her before any treatment. If she has bone injuries to her spine these would show up on x-ray. Also she should start by working backwards - ie start with the date of any recent injury/fall going backwards.
    Anonymous 42,789 Replies
    • February 17, 2012
    • 03:31 PM
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