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
Look forward to getting some replies, Regards