Hello,
I am new to this forum, 2 years ago I was diagnosed with severe sleep apnea. I was having neurological problems that at the time were attributed to lack of sleep. One by one doctors started to become concerned and the referrals to neurologists began. Then Movement disorder specialists. I was told it might be MSA. I eventually had a Datscan at Stanford that said I did not have Parkinsons. I was grateful but my symptoms remained. Over the following year every time I would see a doctor for other things they would shift focus and eventually after examination say...sir I know you are here for this or that but I feel I should tel you that I think you have Parkinsonsons and I want you to see another neurologist. It has been suggested that the Datscan be repeated but my insurance feels that another 15,000 dollar test is not justified. The last movement disorder specialist I was sent to said I have or exhibit SWEDDS which I understand to mean that I exhibit the symptoms of Parkinsons without having a decrease in Dopamine. I was also told that I have distonic tremors. I have found very little written on this and have been given very little advice as to treatment. If anyone on this forum has any experience on this matter I would be so grateful.
thank you in advance