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LeeMcConnell82

31 with possible PD symptoms?

4 posts in this topic

Hello!

I am new to this and would like to talk about whats going on. I promise I will try not to ramble and waste your time. 

I will begin with a brief history. I am a 31 year old confused male. At the age of about 14 i was told I had essential tremors (not a legit diagnosis). The tremors were fine and located in my left hand when in use. Approximately 3 years ago I began having brain fog and was losing my sense of smell, I blamed sinuses at the time. The brain fog would happen sporadically here and there but seemed to last longer and longer. 
My symptoms started really showing in May last year and progressed some what rapidly. 

My wife and I decided to move back to our home state to help take care of her dad who was diagnosed with PD recently. By August last year I was having difficulty remembering and multi tasking at work. I also had problems with balance and my smell was almost completely gone. My boss was worried and put me on lite duty for my safety (I was doing security work at the time).

As time went on my wife became very worried when I had trouble walking and my right arm stopped swinging. I finally said enough is enough and went to my GP who was confused and ran a few test for thyroid and anxiety, both were normal. He referred me to a neurologist who I started seeing in January. This is where the real fun began. Test after test was run and all normal. Since I began seeing her she told me my symptoms mimic PD. She then said its likely not because I am to young and I have no pill rolling tremor. I feel a tremor inside my arm, but it is mostly unseen. 

After checking for approximately 5 other illnesses she stated i more than likely have conversion disorder. I said ok and quickly came to do research. After only 5 minutes my wife and I concluded there was no way i have that. By my next visit in about April i found it extremely difficult to roll over in bed and get out of bed. I became very stiff and dull pain in my shoulders, all around my ribs and neck (mostly right shoulder). My neurologist then put me on a small dose of Baclofen to try and rule out stiff person disease. The medication had absolutely no affect on me.
 
By this time I had problems swallowing, muscle twitches mostly on the right side, and slurring/loose the word i want to say sounding like a stutter. I was referred to a MDS the 20th of last month. The examination was like all the others I had and she said she doesn't think it is PD, but sounds more like function disorder The MDS prescribed physical therapy and wanted to know if I felt any better in the 6 months. I was ecstatic beyond belief and immediately came home to do research yet again. While researching I found out function disorder is the same as conversion disorder. I did have quite a few of the symptoms except paralysis, blindness, and non epileptic seizures. I then began to think I will be going back to square one. My DPT disagreed with the function/conversion disorder and I go twice a week with no relief.
 
After another brief search I had found out the MDS I saw perhaps may not be a MDS after all. All websites say she is not. I am going back to my neurologist on the 28th to see what she says. Since my last appointment I have developed an ongoing twitch in my right index and thumb that has not yet stopped. I am also trying to get into a MDS that specializes in only PD and all tremors. Sorry this is so long, but any help would be appreciated. 

 

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Thank you for the note.  If there is uncertainty among multiple neurologists a next step could be a DAT scan which will tell you if the dopamine system (the dopamine transporter) is affected; thus more likely Parkinson's.

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Dr. Okun thanks for the reply and would like to give you an update

 

I have profressively been getting worse. Much harder to get out of bed now days.

 

I recently had a cognitive function assessments. The results were mild cognitive impairment. Soon after this test my PCP tried me on mirapex which had a small affect on me. I asked to be placed on carbidopa levodopa. He put me on 10/100 only at night seeing as he thinks it's function disorder as well. After a few days i was able to move slightly easier in the mornings. I took it upon myself to try taking a dose during the day with good results. I am still on one pill a day which i take in the afternoon so I am able to work out and feel good for about 4 or 5 hours.

 

I have been told be others on the forums that this is a good sign it is PD. Luckily I am getting all new drs due to insurance change. How should i approach the new drs and can I have your thoughts on the carbidopa levodopa working and also with the MCI?

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It is hard to judge the levodopa response without continued follow-up and documentation using a test called the Unified Parkinson's Disease Rating Scale.  Sounds like you are on the right track and making progress.

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