Parkinson’s? Yes way! Let’s try to be positive.
I’m 52 years old. About six years ago I realized that I am not well, and it’s not getting better. My symptoms were mostly invisible ones. I was straggling with fatigue, brain fog, trouble of sleeping, and difficulty with writing. I tried to diagnose myself using the tools that are available online. After check marking of all my symptoms, the first one on the possible diagnosis’ list was always Parkinson’s. Number two was ALS. I was thinking Parkinson’s? No way! I’m too young to have it. ALS - what? I was completely dismissing those two. I was mostly concentrated on the bottom of the list on those such as metal poisoning and Lyme disease.
Searching for answers
I remember when I was a little child, I did play with a liquid mercury from a broken thermometer. I had several tick bites during my early 30th after I moved to US. I asked my doctor to check my metal levels and for Lyme. Both came back negative. The Doc checked me also for Rocky Mountain Spotted Fever, I don’t know why. However, that one was a positive. I was thinking “Eureka”, this is what was making me so miserable. The Doc prescribed me some meds. After completing the meds, I didn’t feel any better.
My friend told me that I should go to see her doctor, who is totally wonderful. So I did. The doctor checked my blood for everything under the sun. I found that I’m also positive for MONO. Hmmm... The Doc said: “No worries, your body have had already taken care of it.” Ok. Back to the start. I had no answer. The symptoms were progressing.
My Doc suggested to see a neurologist. After assessing me, the neurologist said that I have an essential tremor. The medicine, that he proscribed, didn’t help. At my next appointment I told him that I had so many more symptoms. I also started experiencing pins and needles sensation in my feet, my right hand started freezing, and a lot of pain in my right shoulder joint. My doctor referred me to a university neurologist, a professor. I had to wait a few months to see that specialist. The professor’s diagnosis was Parkinson’s. He proscribed me Levodopa. Levodopa was not helping a lot with my symptoms. So, I stopped talking it.
My another friend told me that I should check my neck. An orthopedic doctor told me that I have a scoliosis. Surprise! He also ordered a neck MRI. I found out that I have a spinal cord cyst - syrinx and a herniated disc pushing onto it. I needed a surgery. :( I was thinking, ok, this is the answer. After the surgery I will be brand new again. I was only upset that they could fix the disc but could do nothing to the cyst.
I had my neck surgery in 2014. The pins and needles in my legs were gone. However, a few months later, my right arm and shoulder were still are very stiff, painful, slow, and shaky. A pain doctor proscribed me pain medicine and a steroid shot. It didn’t helped. Then the pain doctor assessed my shoulder again and said that it is frozen and I need a surgery. 6 months after my neck surgery, I had a shoulder surgery followed by physiotherapy and acupuncture. The pain in my joint was mostly gone, the range of motion improved. But the rest of the symptoms, include my brain fog are still there.
Then again, I went to see a neurologist. At that point I was also experiencing fassicculations in random muscles. The neurologist referred me to John Hopkins University. I had to wait 8 months to be seeing there. ALS doctor looked me up. She said it’s not ALS. “Thanks God”. JHU neurologist did a bunch of tests on me include some radiological brain scans. The final verdict was Parkinson’s.
Parkinson’s! Yes way! I had to stop working three years ago. I used to be a dialysis nurse. I’m taking my Levodopa. And I hate my off time that is longer that my on time. When I worry, my speech gets slurry and I stutter. I feel like a zombie with my half dead brain.
I have no medical insurance and no family support system. I’m seen at a free Health Clinic. I have a long term disability, but I was denied SSD twice. I had a court on May 9th, 2019. They said that I might be able to work as an information clerk, even with my fatigue and a need to lie down a couple of times a day. They didn’t give me an answer. I am still waiting on their decision.
I wish that I had a spouse or a responsible adult child to help me with the chores. However, I am taking care of myself, my 18 yo autistic child, and my 83 father. They both don’t drive and don’t use a phone. My father doesn’t speak English. My boy has social anxiety.
I used to be right handed. Now it takes so long to type this post with my left index finger and with the help of the predictive writing on my tablet. To my opinion, I progress too quick. Most of my symptoms are still invisible, such as: anxiety, brain fog, memory problems, difficulty sleeping, stiffness, endless pain from scoliosis, and a headache. On my off time I am also visibly slow and shaky. However, most of people are still saying that I look good. Probably because I used to exercise a lot. Not now, though. I just can’t find time to take care of myself.
I wish to write something inspirational, but it is so difficult. I mostly cry when I read other members’ posts.
Thank you everyone for reading. Let’s try to be positive.
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