I am going to try and keep this short and sweet. The new MDS said that he would not look at me the way that I presented today and come to the conclusion that I have Parkinson's Disease. He did take into account that I am still carrying meds on board and I might be different when they all wear off and completely leave my system. Another thing that he commented on was that my tremor is too fast for PD. I didn't take my meds this morning, so I was my usual shaky self and that was evident throughout the exam. This doctor has a different philosophy than my previous doctor. He doesn't believe in just trying a medication to see how a person responds. He said that that is not the way to find the answer and he said that it is possible to have other things that actually do respond to Mirapex because of similarities. This doctor prefers to be the scientist first and try and figure out what is going on , then try medications. I am certainly with him on that one! He wants me to go off of the Mirapex and he gave me a step down plan to follow and I am supposed to keep him updated on how I am doing. I am a little nervous, but I am going to do it and see what happens.


This is where it gets interesting. I am a type one diabetic. This was determined by a GAD Antibody test that was performed about seven years ago. I also had the same exact test repeated in April of this year. My GAD level was 2.0 and that is above normal. Apparently, GAD antibodies can indicate other diseases. There is something called Stiff Person Syndrome, or SPS, that my MDS is concerned about. He was in disbelief that this information about my elevated GAD levels was right in my chart and three doctors saw it and just dismissed it. Well, he is looking into it. He ordered an EMG and a bunch of very specific blood work. In addition to Stiff Person Syndrome, he is also looking into/ruling out the possibility of Thyroiditis as well as something called Paraneoplastic Syndrome. I had already read up a little about SPS, but not the other things that he is considering/trying to rule out. I am not too c oncerned about the Thyroiditis, it seems like it would be simple enough to fix. However, I am concerned about the Paraneoplastic Syndrome. If you are interested, read up on it. The Mayo website has some really good info. I am going to copy and past this from their site. I am not sure if this is okay or not, but here goes! If this is not okay, then sorry :-( Do what you have to do and delete it.

Here it is:

What are Paraneoplastic Syndromes?
Paraneoplastic syndromes are a group of rare degenerative disorders that are triggered by a person's immune system response to a neoplasm, or cancerous tumor. Neurologic paraneoplastic syndromes are believed to occur when cancer-fighting antibodies or white blood cells known as T cells mistakenly attack normal cells in the nervous system. These disorders typically affect middle-aged to older persons and are most common in persons with lung, ovarian, lymphatic, or breast cancer. Neurologic symptoms generally develop over a period of days to weeks and usually occur prior to tumor detection, which can complicate diagnosis. These symptoms may include difficulty in walking and/or swallowing, loss of muscle tone, loss of fine motor coordination, slurred speech, memory loss, vision problems, sleep disturbances, dementia, seizures, sensory loss in the limbs, and vertigo. Neurologic paraneoplastic syndromes include Lambert-Eaton myas thenic syndrome, stiff-person syndrome, encephalomyelitis (inflammation of the brain and spinal cord), myasthenia gravis, cerebellar degeneration, limbic and/or brainstem encephalitis, neuromyotonia, and opsoclonus (involving eye movement) and sensory neuropathy.

Okay, now you have a general idea. I think that the reason that the doctor might be concerned with this is because I found a lump in my right breast two years ago. The doctors have been following it and have told me that it is a Fibroadenoma...not cancerous. Apparently, with this Syndrome you can have symptoms before you actually develop cancer. Yep...that is a little SCARY!!! The doctor asked if I had ever had a needle biopsy or a PET scan. I have not. I have only had x-ray, mammogram and ultrasound. I need to go in for a follow up and get this all checked out again.

Obviously, I have a bunch of stuff running through my head right now and I am not sure what to think about any of it. My doctor is going to call me after he receives the results from my EMG and blood work. He is going to forward it on to another doctor that he knows at the Mayo Clinic. He speculated that it might be a little more than two weeks before I hear anything from him. I am just going to focus on today for now. Tomorrow will take care of itself. I will post more as I have more information.

Thanks for all of your support!

Evonne