I went to see a neurologist privately today, mainly to discuss the possibility suggested by certain medics over the years that I may be suffering from another rare neuromuscular condition (Myasthenia Gravis - MG). This has been suggested as I have double vision and the muscles in my throat have gone weak (as well as my right eye closing up in sunlight and other things). The neuro is not 100% convinced it is MG, but is going to arrange for me to have some blood tests and EMG tests to rule it out.
We did however discuss my weird symptom of my hand and lower arm jerking uncontollably when I yawn and he suggested this may be due to the Cerebellar Hypoplasia that was picked up on my Brain MRI back in July 2005. Apparently, it means the right hand side of the back part of my brain didn't form properly before I was born - this is the area that control movement and apparently yawning is controlled by this part of the brain as well. He said he had heard of this symptom in other people with Cerebellar Hypoplasia, not that there is much that can be done to treat it though
I also get jerky muscle spasms (Dr H said it was called Myoclonus) in my right leg. My cerebellar hypoplasia is on the right hand side and apparently, it affects the same side of the body, rather than the opposite as is the case with the rest of the Brain.
At least I feel I have an answer now as to why I get this problem. The Neuro was all for doing a repeat MRI until he heard I don't have insurance (I was taking advantage of my Cash Back Plan to have the Private Consultation as I can claim 50% back). I could have had the tests done privately but it would cost around £1000.00
which sadly we can't afford. He is going to write a report for my GP suggesting I be referred to see him in his NHS clinic. You could say it was a waste of £100.00, but I think if i had been referred to see him on the NHS first time round, I would not have got as much time to go through all my concerns as i did having the private appointment (not that I agree with this of course, but sometimes paying out is the only way to get anywhere
It will be interesting to see how long it takes for the NHS appointment to come through.
Gila, out of interest, Cats quite often have Cerebellar Hypoplasia, in fact when I first looked it up on the net after reading my MRI report, the first site it directed me to was called "Living with a Disabled cat". It seems as though it is more common in cats than it is in humans. It also directed me to a You Tube video showing a pair of cats with the condition that kept falling over to the side (something that I do a lot of too).
I will keep you posted once I have had the further tests.
Take care all,