I was diagnosed on my 28th BDay as having PD and I will be 45 this year. I used to not question it too much but this past year has been more than difficult and I am having new issues that make me wonder if I have PD or some type of anxiety disorder. It all started with a tremor that started in my right hand. I had gone thru my Mom dying after a 2 year battle with A.L.S. (I was 17 and just graduated from Highschool), then my 12 year live in relationship ended, my Best Friend's father committed suicide with a shotgun in front of me, and I had to go thru back surgery and serious back pain issues on a work related injury and lost my job. I was more than a little stressed out and it was during these events that I started shaking on my right side. It started out only on occasion that my thumb would shake (around 18 years old) and then it later turned into a constant tremor on my right side where my whole hand and arm started shaking all the time. I had problems using my arm while brushing my teeth and later was dxn'd as having Parkinsonism and then later told that I had PD. ]
After I started taking Sinemet my tremor and symptoms greatly improved but my anxiety has been out of control since i was little and has gotten much worse over the years. My anxiety is so out of control that my Nuero didn't want me as a patient. He said that my problems were out of his knowledge and schooling and that he could no longer help me and he felt as though i was over medicating myself.
However, my tremor/symptoms were so under control that my current Nuero swore I didn't have PD and was misdiagnosed. He wasn't even going to take me as a patient but asked me to come in to see him a 2nd time, after he cut back the Rytary dosage, and asked that i not take my meds on my 2nd appt to see him. My tremors were so bad that he then believed that i did in fact have PD and took me as a patient.
Last Sept I was told I had Breast Cancer and my PD symptoms started getting worse. My tremors have returned and are now in both hands and in my right leg. I was told it was the stress making my pd seem worse and that after my Cancer treatment was over I would more than likely return back to my routine PD and symptoms.
It has been almost a year since my Cancer surgery, radiation treatment, etc and I am still getting worse. I don't feel like myself anymore. It has been almost 17 years of coping and dealing with PD and I can believe how worse things have gotten.
My symptoms are different now tho, my tremors will start all of a sudden and sometimes they are pretty severe. They can be totally gone and then start all of a sudden, usually when i know it is close to time to takes my meds. If i start thinking too much about things i start shaking and I used to be able to calm myself down and then they would disappear again without having to take my PD meds. Sometimes i can calm myself down enough that I can go as long as 7 hrs in between Rytary dosages. Is this normal?
Other times, here lately there are times when the Rytary doesn't seem to work at all. Even taking as high of a dosage as 5 capsules of 145mg at a time every 4hrs. (this was ok'd by my DR but seems like an awfully high dosage to me) so i have went back to taking 4 capsules of 145mg of Rytary which also seems like it is a high dosage and i often have episodes that are like severe panic attacks but will twist my body into weird positions and bend my head and neck backwards until it makes popping noises and spasms my legs and arms into odd positions and causes my feet to go up in the air. I was told by an E.R. doctor that i was having a Dystonic reaction to the Rytary or Carbidopa levadopa and given Benadryl as an antidote to counteract the medication but was also told my current Nuero and another Dr that i shouldn't take Bendaryl because it takes Dopamine out of the brain and isn't good for ppl with PD.
My PD medications often seem to make me feel more anxious and less able to control my PD tremor and symptoms, and makes my head feel dizzy. It feels like my body is fighting against the medication but if i relax and the Rytary does work right I usually end up with Dyskenesia where i bob my head uncontrollably and sway around like Michael J. Fox. Which was diagnosed right before I was diagnosed, making me feel like maybe this is all in my head and something that manifested thru anxiety. Now my attacks have gotten so bad that i often have to have shots of Apokyn to make the Rytary work. The Apokyn makes me feel like i am going to throw up, clammy and sweaty and at times makes the room spin. Plus there is a possible conflict with my current hormone treatment that I am currently on for the next 5 years as part of my Cancer treatment. i have to have EKGs done to make sure the 2 medications don't cause an Arrhythmia heart condition. I also have developed Tachycardia, where my heart beats too fast and i am on medication for that now as well.
I have exhausted the E.R. at the Hospitals closest to where I live because of having these attacks and anxiety issues and they all know me and just kind of disregard me as having "severe panic attacks" and put me in the waiting area at times with my head bent backwards and in severe pain. I have had to call my Boyfriend to come and give me a shot of Apokyn because the Hospital ER staff refuse to do it and I cannot physically give myself a shot during an attack.
Recently i had a strange thing happen at my current Nuero's office. I was starting to tremor and it was time to take my Rytary but the nurse asked me to wait to take my medication since the Dr would be in shortly and that way he could see me off my medication. I have been seeing this DR for the past couple of years and feel very safe in his presence. So I held off taking my meds and when he came in my tremors went away and I actually went from feeling like i needed my Rytary to having Dyskenesia and ended up not taking my medication until many hours after that. I went 3 more hours before i took my pills, a total of 7 hrs with no medication. My Dr said that isn't unusual that PD is unpredictable like that. I didn't think that was possible with PD but maybe I just don't understand my illness. It really has thrown me for a loop and confused me and makes me sad that i can go that long between medication when i feel safe and secure but at home where I have lots of anxiety i often feel like i can't even go 4 hrs between dosages.
It feels like since i started taking meds for PD that i have gotten worse and have more health issues now than before i started treatment. It makes me wonder if this is all Parkinson's related or is it something else? I really wish there was a test to confirm my pd diagnosis.
I know this is like a short novel to read but i don't know how to explain what i have been dealing with in a shorter version. So if you took the time to read my post, i greatly appreciate it and any advice you can give or personal experience that you can share with me to explain what i am dealing with because after being seen by 5 neuro Drs and several ER visit later I still don't have any answers.
No Longer Have PD.
Husband just diagnosed with Parkinson's So confused!
Need advice on my tremor symptoms 
