Misdiagnosed Parkinson's

[JimAtBeach]

Hello all,

I had slight tremor of right hand and my right arm had stopped swinging about 4 years ago. They put me on levidopa and I took that for about 6 months and nothing really changed. They upped the dosage and urged me to take a SynOne biopsy test which I did. The results were abnormal the Asyn protein and abnormal for low density nerve fiber bundles. Never had hallucinations, incontinence, shuffling of feet. My tremor never got too bad and was an active tremor, not a resting tremor. Levidopa upped to 65/245 4 times per day at this level for about 8 months and no change.

I am a disabled Vet with PTSD and exposing to hazardous chemicals like TCE. I was a nuclear weapons specialist. I'm 59 next month. I've dealt with both in the VA system neurologists and one outside.

Last month it was suggested to my by a movement specialist (Dr., PHD) that I taper down the levidopa and see what happens. I gradually reduced at 25% per week for four weeks and am off it completely with zero worsening or getting better.

About two months ago calf muscles began fluctuations/ twitching and they have not stopped. Cramps come often. I am weak and fatigued every day. I have terrible balance issues. My tongue has started to have the same twitching that my calves do. My back aches all the time. I do have a degenerative disc issue especially in the cervical region. My head is dropping forward and to the left side and feels so heavy. My neck has shrunk. I have sleep apnea. I have trouble swallowing and choke on my food occasionally. My hands cramp up in odd ways when I go to pick up something small. My brain seems to be working OK.

I see the movement disorder specialist outside the VA system mid December but have requested an earlier visit considering the swallowing and tongue twitch issues that have arisen.

To me this seems like ALS. Has any else been misdiagnosed?
Thanks everyone!

 

[lgelb]

I'm sorry you are going through all this.

The SynOne test suite is only 95% sensitive/specific for synucleinopathies. So there is always room for error. In addition, it tests for more than Parkinson's and it's the clinician's job to follow up with any additional exams/testing needed to differentiate these or conclude something in that 5%:

• Parkinson’s disease
• Dementia with Lewy bodies
• Multiple system atrophy [this seems like the most probable in this particular list]
• Pure autonomic failure
• REM sleep behavior disorder

It is certainly not outside the realm of possibility that you could have a Parkinsonian disorder that has some overlap with symptoms of ALS, for example, or vice versa. Considerable overlap has been documented.

I don't know what centers you've been to, but I would suggest a major neuromuscular center in Philly or NYC. I know the VA has a major movement disorder center w/ Penn.

Also wondering whether you are getting PT for the spine and using xPAP for the sleep apnea to minimize confounds as well as reduce your symptoms.

 

[JimAtBeach]

Yes I know all about the SynOne test, thank you for the cut and paste. I wasn't implying it confirms ALS, but it certainly points to MSA-C which is really the only other option besides ALS. I'll let the neurologist figure it all out. Last night I couldn't swallow my food and had to hard swallow twice to keep from choking. It is what it is, both are terrible and terminal.

 

[lgelb]

Again, only 95% specific for anything on the list, was my point.

But in any case, you might want to modify your diet, avoid plain water, drink slowly before and after, etc., avoiding skins, seeds, raw produce, kernels, whole spices, dried fruit, etc. and focusing on nut butters, eggs, cow-or oat-based dairy, canned fruit except pineapple, applesauce, pureed meats, things that can be easily blended into soups and smoothies that you figure out your best texture for. You can figure out your own triggers, but you see what I am saying. And if/when you are to the point where swallowing isn't safe, at your discretion, they can code an unknown MND and place a feeding tube, irrespective of a final diagnosis.