Parkinson’s Disease Community
Early Onset PD? Putting myself out there . . .
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This patient support community is for discussions relating to Parkinson’s disease, anger, anxiety, depression, balance, facial stiffness, genetics, handwriting difficulties, speech movement difficulties, nutrition and diet, rigidity (stiffness), sexuality, swallowing difficulties, tremors (shaking), walk (shuffling), and work issues.

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Early Onset PD? Putting myself out there . . .

Needing to share my thoughts in hopes there are others with a similar situation. Any advice or support is appreciated. To make a very long story short (I'll do my best). . .

I've been healthy for most of my life. I noticed after college that my personality became more moody and I would get easily "worked up" or easily depressed. My doctor lowered my birth control and that helped a bit, but I'm still suffering from anxiety and depression that has been all new to me in the last 6 years. As well, I had major issues with gas/digestion. My doctor diagnosed me with IBS-constipation and gave me medicine. It worked, I made adjustments so that I wouldn't need the medicine.

Then about a year ago I had this weird, uncomfortable pain down my left arm which sent me to my GP. My symptoms in a 6 week period were burning feet, numb hands, dizzy, acute muscle spasms, trouble sleeping, walking and then my leg would just stick like I couldn't move it, and I'm sure I missing many. Between seeing my GP and a Neurologist I had bloodwork, a NVG, EMG, MRI and sleep test. They ruled out rheu. arthritis, lupus, ms, b12, diabetes, fibromyalgia, carpal tunnel, cancer. The only I was diagnosed with was Peripheral Neuropathy.

I ask the neuro.. so what can I do to help the symptoms?  He said exercise. That's it! I said well do you think it's anxiety or mental and he said he didn't think so.

My father has Parkinson's disease. He is 72. He had symptoms for many years and they told him it was not PD. Then he finally got diagnosed at 70 or so.

I work out and eat healthy, yoga ect. Now, when I do this on a normal basis, I find myself not having symptoms. I was hardcore healthy then stopped, had the weird 6 week stint which lead me to go GP and Neurologist. Then I got hardcore healthy again for several months after all the tests and felt pretty good. I haven't worked out regularly for the last 3 months. And now I feel terrible again.

I get it - work out, and stay healthy. But I'm 31 years old. Write now as I type this my hands are hurting, when I write something down it my hand burns after a few sentences. My handwriting looks like crap and is nothing like it was when I was in school. Last week I had blurry vision and heavy arms. This week I'm having restless legs, very fatigue, easily confused and my muscles ACHE all over. It's like I was fine for a while then I went away for the weekend and came back - boom feel crappy again.

I have an appointment with my GP again next week. I'm going to "start over" so to speak. I'm just looking out to this community for some kind of support or guidance. I'm in one of those positions where I love my life and yet my body is telling me otherwise. It makes NO sense. That's why I don't want to just ignore this stuff and then find out later something's been wrong the whole time.

Thanks - :)
3 Comments Post a Comment
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Avatar_f_tn
I have more. Sorry, my story is so long. I also had my eyes checked last fall and the doctor said she didn't understand why I was having trouble with vision as my vision looked great. She looked at Optical Nerve and she said that looked good from what she could see. I also pee a lot, I can't take it to stand very long and have to sit often. When I get up from a chair I feel tight and stiff. This week my neck, back and shoulders were killing me. I got a massage and it helped that night, helped me sleep. The next morning I felt great. By the end of the day, the discomfort was back. When I turn in bed to move I feel like I haven't used my muscles in days.
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3057217_tn?1340431521
Hi Emmy

My husband is 54 and he has had Parkinsons for about 8 years.  His symptoms were progessive and slowly have increased in intensity.  Meaning first there was a tremor, there was some depression and moodiness, then he started to just slow down, he started dragging his feet, muscles got tight, then balance, etc.  

What strikes me though is when I read your post I immediately thought of MS or Polymyositis (which I have).   Both are autoimmne and flare for a while and then get better. I suggest you check both of them out and also mention it to your dr.  Hope you feel better.  
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Avatar_f_tn
Thank for you commenting. I appreciate it more than you know. As I don't have a lot of people to talk about this and I don't want to overwhelm my husband.

Actually the neuro said a year ago "I'm going to check for MS, but I don't think that is what it is." Then I did the MRI with and without the dye. One of his nurses called me to tell me my MRI was clear. That was that. They didn't want to see me or follow up or offer any advice.

I was feeling better Saturday morning, then I went to a concert. I had two alcoholic drinks and then about 45 minutes later my arms were a little heavy and it tired me to stand. My legs felt restless. It sucked. It is apparent that alcohol and I think even caffeine is affecting this.

I tried to write again today at my desk. I lasted about 2-3 minutes before my hand and arm burned. And now it won't go away. Arrghhh! I digress.

Thanks again for your comment. I don't know what Polymyositis is. ... Thank you for your sharing. :)
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