RLS/Sensory Neurology

I originally posted on this site many moons ago regarding my RLS, however, I can not remember the email i originally joined with, so hence Ive re registered.

When I originally discovered this forum, I was seeking help/advice regarding my RLS...At that stage it was affecting ALL limbs, causing pain along with the normal RLS symptoms...I had struggled to get any medical help and had recently been diagnosed pramipexole.

Skip forward roughly two years and I have now managed to get 'some' medical advice and help.

When i was first sent to see a neurologist, he was both dismissive and almost disinterest in the symptoms i described...Stating it was almost certainly 'only' RLS. He perscribed the pramipexole to be increased to 0.55mg x3 daily. As an after thought, he grudging sent me for a procedure called electromyography. During this procedure, it discovered that im suffering from something called sensory neurology and that my RLS was caused by this.

I had to wait almost 12 months before i could see the neurologist again. His attitude and behavior was completely different. That was the start of finally getting treatlment and help for something that had destroyed my life since 2001.

Long story short ( And i am trying to be as brief as possible without leaving out anythig important)...After undergoing numerous blood tests, scans and being made to feel like a human guinea pig, it transpires that my sensory neurology was due to a secondary infection or disease, but was, in all probability, something i was born with. This kind of sensory neurology is extremely rare, but I feel its something that people need to be aware of.

I have multiple symptoms of severe RLS, but the line between the illnesses is constantly blurred and so i have to be treated as if both diseases cause the same effects.

Now I am resigned to the fact that this is a degenerative disease, however, I am learning to live with the disease rather than looking for a cure. Pain is now a constant companion, it is however, somewhat controlled through medication.

What i am wondering is if, any members of this forum, have been diagnosed with RLS caused through Sensory Neurology. Also, have any members been told that there RLS is either hereditary, or they have a genetic disposition towards neurological issues?

Sorry for this being long winded, but trust me when i say it could had been much, much longer :p

Look forward to getting some replies, Regards

1 Reply

  • genetic disposition towards neurological issues- yes. My father passed down

    to me a mess of bad wiring. My sensory nerves are mis-firing. I had RLS

    a long, long time but as a child, my parents thought that I had a bug ..or

    some insect disease from playing in sand boxes so I was on a lot of

    antibiotics for numerous years.. and my parents gave me a pin worm

    treatment even though I didn't have it. They punished me for having to move

    around and for being "hyper legs on purpose during church, school."

    I have plenty of mis-firing nerves and hyper active nerves.. to date..that's been

    proven.. I had shock tests (very painful) and then pain started showing up

    where I shouldn't be hurting.. I broke my shoulder- My lower back started in,

    My shoulder never hurt at all. I just couldn't move it if I tried.

    The sensory nerves that no longer function drive me nuts. I feel like I have

    socks on my feet.. always. I can't feel hot or cold, sharp or anything that

    would cut my feet or legs from the knees down. I was told that the sensory

    problem can go up higher..my hands will be next. =./. There is not treatment

    that can stop it but I will have anti depressants and other nerve pills that

    will help with the pain. I won't recover "feeling" in my feet or lower legs..

    I had some troubles with it as a child so yes...I was given this precious

    gift from my father. He also gave me pre diabetes..I am physically fit and

    eat healhier than anyone I know. I work out everyday despite RLS, RA,

    that Nerve Issue and that Pre Diabetes thing... Guess what one bothers

    me the most?

    RLS (by miles) even though the doctor thinks that all of the others are

    far worse and need the most attention. RLS keeps me up moving my legs

    trying to get comfortable.. I can't until I get up and stretch, walk (miles sometimes)

    while I lose that most important sleep.

    Here is another cross over disease. So many of us have more than one

    severe condition. We are on mixed medicines for treatments.

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