Next week I see my neurologist to review my MRI results. I have a bad feeling that after we review my symptoms etc, I might get a change in diagnosis.
I have no tremors but I do have stiffness in my legs and not much relief , if any, with Levodopa.
Lot’s of autonomic dysfunction symptoms (urge incontinance,trouble emtying bladder,constipation, night sweats and ED) just to name a few. Balance issues and micrographia as well.
Any one else have similar issues and if so, what diagnosis?
I have everything you said and my new PK doc made a comment it was MSA. I have been diagnosed with PK for 16 yrs and he thinks I should be in terrible shape.
If it's MSA, I think you would be a distant memory by now as the majority of Patients don't make it to 8 years. Only 5 in every 100,000 people get MSA.
How are things going for you 16 years in? What are you taking that helps you with symptoms ?
I told my wife the same thing and she was furious with the Dr. She's going to go with me next time. I'm on carbidopa Levodopa, senna extract, meds for bladder, B-12 plus other meds for other problems. I do not have tremors just very, very stiff and freeze if I forget my meds. I often fall back or to the left but I haven't fallen all the way down in a long while. My biggest issue is I is that I now can't remember things and just don't care about things. Everybody tells me I'm depressed but I'm not depressed I just don't care. Every now and then I'll see things and my wife complains I don't finish my sentences. Lately I started having problems opening my eyes; it feels like there's a rubber band wanting to close my eyelids and they burn more. How long have you been diagnosed Pilot108?
September 1, 2018
Research says about 25% of people diagnosed with PD will get a changed diagnosis. It's apalling that doctors are wrong 1 out of 4 times.
What is telling are your reflexes, they are normal in atypical PD and related pathology, but exaggerated or hyperreflexic in neuromuscular conditions such as ALS, which is a syndrome that also has ataxia and dysautonomia. I know because I am living this scenario. Originally dxed with Parkinsonism w/tremors and thought it was MSA. It isn't.
The MRI will show if there are MS lesions, but MS comes with ocular signs and vision problems. You don't really need NCS/EMG or a DaTScan (I've done both) to confirm. A clinical diagnosis is sufficient. The tests I mentioned are invasive and the imaging uses radioactive isotopes - they are not benign. The EMG caused new fasciculations, the last thing we need is doctors assaulting our nervous system. My hair fell out after the DaTScan.
The stiffness is caused by muscle spasticity. MSA and ALS can look similar to the patient, but the pathology is very different, one is neuromuscular and the other isn't and are easy to differentiate by testing reflexes.
There are a couple tests you can do yourself; stick out your tongue while looking in a mirror - do you see fasciculations? The tongue is pure muscle, fasciculations are easy to see. Have you experienced fasciculations in other muscles such as arms or legs? Video record them and show it to your doctor. Also, is there atrophy or enlargement of your tongue or a noticable difference in muscle size between the right and left side? Take pictures to show the doctor. Calf muscles can actually become enlarged from excessive nerve stimulation at first in neuromuscular disease, and is typical of muscular dystrophy.
For ataxia, you do the Romberg test. Stand with your back to a corner and put a chair in front of you without touching either one. The idea is to protect yourself from falling if you lose your balance while doing the test. Stay safe. You stand still with your feet together and arms at your side for 30 seconds. Do you sway? Now close your eyes. What happens? For me, closing my eyes causes severe swaying, it's loss of proprioception, the sense of where your body is located in space. This is called sensory ataxia in ALS and is different from cerebellar ataxia in MSA.
These three things; reflexes, balance and fasciculations, are important to pay attention to. So is muscle atropy and weakness. Have you lost your arm swing (shoulder weakness)? Can you stand on your tip toes, how about your heels? These will show weakness in the calf and shin muscles, especially foot drop, where your toes catch on things or you don't pick up your feet when you walk. Walk down a long hallway and ask someone to observe you. Do you limp? How's your hand grip strength?
It sounds like you are a pilot, organophosphate exposure is an important factor in neurological disorders and the doctors know it. They may be reluctant to diagnose you because it is a work related neurological injury.
I don't say these things to scare you, I say it to empower you. I was poisoned by Roundup, it is an organophosphate, that can and does cause ALS. I have been subjected to gaslighting by almost every doctor I've seen (medical abuse) and have been subjected to sham neurological examinations, like trying to avoid tapping the patellar tendon and saying reflexes are normal. You need to advocate for yourself and document.
Bring someone with you to the appointment to act as a witness. If your state allows it, record the conversation if you need to and feel that you're not getting the standard of care that we all deserve. These are things I wish I knew and had to learn the hard way. My prayers go with you.
SE
Thanks for all that valuable information , I will try your recommendations
Sweating and Parkinson’s 
Metformin for Parkinson’s? 
autophagy and Parkinson’s
The stages of Parkinson’s 
