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Hi, Just wanted to share that I received my Fox Insights 23andme dna results back. I did not have the 2 Parkinson's genes they test for. Go figure! Doesn't make it go away, but good to know I guess. Also, I saw a movement disorder specialist and had a datscan that confirmed early-onset Parkinson's but she wants to hold off on meds until my symptoms get unmanageable. Has anyone else's doctor suggested this? Lastly, do any of you feel way more anxious, shaky, jittery when you are sick? I have a horrible cold and have felt wretched for a week. I don't recall cold viruses affecting me that way before diagnosis. Thanks everyone!
Posted with permission to share - from a private email to my friend NN! If anyone knows more about the lab tests PLEASE share with me. Or if you would like info on The Cleo Roberts Parkinson Center. My email is up on my profile page. See I warned you all - I would get attached to you lol. Hello Julie, First let me say that Dr. Dhanani and all of the staff were kind, attentive and caring in their approach. She spent about 2 1/2 hours with me. I felt comfortable and that she was listening to me and she was asking the right questions, without me getting any “hurry up” kind of vibe. The Maricopa County Hospital system, where the Neuro I had been seeing , and who had pronounced PD dx - did not send any of my records to Dr. Dhanani as requested. I had no faith that they would so I was prepared with all my copies of my visits with them. All except for the disk with the 2 MRI’s. Dr. Dhanani wants those badly and her office staff got on it right away. I also need to add that my hopes and expectations were wildly out of “reality” range. LOL - hope was that with one look at me she would say - no way! Not Parkinsons. I’m a dreamer. With that out there...here’s what happened. I looked around the waiting room and noticed I was the only one partially paralyzed and sweating, with visible tremors. In particular there were couple of very senior ladies with walkers, doing very well. My thought is boy howdy, If this diverse group of people have PD also, then I am at the right place. Dr. Dhanani is a Movement Disorder Specialist. Not just a Neurologist. I had not been evaluated by a MDS. Not an unpleasant experience at all. Something I found really interesting was I had my blood pressure taken seated and with the cuff still on was ask to stand up. She re-inflated it quickly and the results to me were amazing. 9:29 AM 136/82 that's sitting. 9:31 AM 102/77 standing. Wow, no wonder I get dizzy, sweaty and wanna throw up or pass out every time I stand up. Walk, push against my hand, squeeze my finger, close eyes tilt head back..stuff like that. Then some brain function activities: count from 100 backwards take away 3 each time. 100 -3= all way down to 0. What day is it. Where were you born. Then some discussion regarding my mental state. Are you anxious? Do you want to have Parkinson’s? Are you depressed. Insomnia? On my next appointment I will be put on some sort of anti-depression meds. But not yesterday, she did not have enough information so she ordered a huge blood draw-I’ve had plenty in my life, well you know all about that - with hypothyroidism every six months. Julie picture a large- restaurant sized glass Tabasco bottle, empty and without a label. That was exactly what the container looked like that was filled with my blood. No little glass tubes. She is going to run A LOT of tests. Changed meds a bit/ amounts and frequency and next appt. in 4 weeks. Unless something comes up from the blood work. In which case they will call me (and I believe that they actually would call me). I will be taken off the Clonazepam at that time. Whew, off from 1Mg 6X-daily. But then add a new Anti-depression med. And perhaps others depending on blood work. She wants a DAT scan most likely ordered then also. When I got home I am reading over my “patient plan”. I had to Google a lot of terms I did not understand. So I will share it exactly as it is written Ok. Provider Plan: Theresa is a very pleasant 56yo female being seen for involuntary movements. She has paratonia right arm along with tremors and myoclonic jerks. She took her meds and felt them kick in 15 minutes with some relaxation of muscles. There are some Parkinsonian features (unilateral rigidity, bradykinesia), there also appears to be psycogenic overlay. For now I will increase her Amantidine 100mg 2x-daily 8am & 1pm along with changing Sinemet 25/100 to 8am, 1 and 5pm. Take Clonazepam 1mg @ noon & 1 tablet, 1 hour before bedtime. Temazepam 15mg capsule as needed (insomnia). Lab Orders: RPR W/RFLX TITER and FTA Abs - Don’t know what this is CERULOPLASMIN Check for Copper content - rule out Wilsons Disease ANA SCREEN W/RFLX TO TITER Check for Lupus DNA Ab. DOUBLE STRANDED Again Lupus TSH W/REFLEX TO FREE T4 I know something re: thyroid but not what exacty VITAMIN B12 No idea why THYROID PEROXIDASE (TPO) Ab Check for Hashimoto’s or Graves THYROID ANTIBODIES Once I decoded as much as I was able I come away with paratonia is in the paralyzed family. Myoclonic Jerks is in the seizure family. Tremors, unilateral rigidity, bradykinesia are in the PD family and psycogenic overlay is mental- in my head, stress or depression that may be making my symptoms more pronounced. I am grateful to finally have someone who is open to idea that I may not have PD. Or maybe I do have PD with magnified symptoms due to depression and stress. or PD+ other problem yet un dx’d , Lewys Bodys. Lupus, Wilsons Disease. Maybe thyroid will be the one causing all the trouble. Hashimoto’’s or Graves. Oh, by the by - my mom and her army of senior lady friends have managed to stuff me like a Christmas goose the past month. I weighed 96.1 oz. Proud of that. Up from 92! One more tidbit of info: I have not tried yet but will. RE: constipation from meds. Dr. suggested SMOOTH MOVE tea. Need to find a health store I think. My opinion- oh that is so easy. Different as night and day. I feel hopeful. Keep your appointment. First time I have not felt like I was just being “jerked around” PD humor lol! I thought about posting this in open forum, perhaps someone knows more about the lab orders or may be interested in The Cleo Roberts Center as an alternative to their current Doctors? What do you think? Best to you and yours my friend, Theresa
Caring for a person with Parkinson’s can be challenging. As motor skills decline, simple tasks may become more difficult. Patients with Parkinson’s disease may progressively struggle to be independent. The main focus of our program is to address the gaps in knowledge and enhance the existing level of care. For more information about this online neurology CME activity and to register, please visit http://www.pdcme.com or give us a call at 855-276-6855.