I plan to call doctor on Monday. Thanks for the nudge. I'll let you know what I find out.
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Sat, Jan 18 7:53am · Multiple Sclerosis (MS) - please introduce yourself in Brain & Nervous System
I have not been diagnosed with MS. However, one of my symptoms of PD seems to be similar to the ms hug: Diaphragmatic dystonia. Austedo is helping reduce the symptoms. I'm a 73 year old retired nurse. The first PD symptom happened in the 1990s – REM Sleep Behavior Disorder. I had thrown myself out of bed and across the room. The dream I was having involved a crowd of people chasing me as I dove into an elevator. I was diagnosed with sleep apnea. Only used the machine a few times. Next came handwriting changes. In 2006 I found out I lost my ability to smell when there was a fire in the kitchen and I couldn't even smell the heavy dark smoke. Changes in dexterity: tying a bow, gift wrapping a package. When I noticed tremors the GP and sent me to a neurologist. He ordered a DAT scan and said I definitely have PD. Over the years I have seen 8 specialists and have had conflicting diagnoses. No one has ever mentioned MS – yet. I live alone. I have supportive family and friends. I have a part-time caregiver, . Since I no longer drive, I get my groceries from Walmart, having them delivered to my home. That is a wonderful service for shut-ins. I haven't researched MS yet; I figured if 8 specialists didn't bring it up, I probably don't have it. Anyone have experience with Austedo?
Sat, Jan 18 6:54am · Multiple Sclerosis (MS) - please introduce yourself in Brain & Nervous System
Before I go to a new specialist, I look up on YouTube what the exam/first visit will be like. Look for "neurological exam" or "exam for head trauma" etc. It relieves anxiety. I find out what questions the doc will ask so I can organize my thoughts and have accurate answers ready. I can compare the doctor with the YouTube doc. I know every doctor does exams differently but seeing a medical professor do a comprehensive exam on your computer screen can provide you with good information. Two thoughts about the prednisone: 1. Taking it before seeing the doc will eliminate some of your symptoms. The doc may not be able to assess your pain level accurately if you are on prednisone because it relieves pain. 2. It's possible that he wants to see how you react to prednisone – whether or not it decreased your symptoms. That can help him come to a more accurate diagnosis. Definitely write down all your issues, past injuries and illnesses and all the questions you want him to answer. I print out 2 copies – one for me and one for the doctor.
The new drug, Austedo, seems to be helping. I call it my miracle pill. The rib area spasms occur briefly just a few times a day and I have less breathing issues. I'm having new symptoms which I'm guessing are side effects of the drug: swollen feet and legs up to my calves, constipation, weight gain. I wonder what the breaking point is – when the side effects are worse than the reason for taking the drug. I suppose the doctor will help make the decision. I'm tapering up more each week. Started at 6 mg twice a day and now I'm up to 12 mg twice a day.
I don't think there has been any improvement in exercise tolerance. I stand less and sit more. Still get out of breath walking in my small house. That would be the distance of about 4 car lengths. I watched a You Tube video last week: QiGong for Parkinson's.My participation consisted of observing and thinking whether or not I could/would do the movements.