I posted before that I tested positive for alpha-synuclein in all three sites of my cutting-edge skin biopsy. I tested positive for autonomic abnormalities, as well. My MDS diagnosed me with either Parkinson’s or MSA-P.
I can’t have an MRI because I have a pacemaker. My CT shows no atrophy of my brain.
Is there any other test which might give my MDS the ability to narrow down my diagnosis?
It would be nice to know if my autonomic symptoms are MSA-P. Or,if this is a diagnosis of Parkinson’s.
The test for Parkinson's is non invasive mostly looking at how you walk etc, could you have that first? Good Luck
Neurophthalmology testing can rule in or out MSA. I was dxed with Parkinsonism that I thought was MSA; testing ruled out MSA, my probable diagnosis was ALS, it was validated by a neuromuscular disease specialist. I went to the University of Iowa.
I know much more about this; a simple test is to check your reflexes - normal is PD, hyper is neuromuscular. Has Multiple Sclerosis been ruled out?
MS has not been discussed. I have two cousins with MS. I will check on neuropthomology and neuromuscular doctors.
*Neuro-ophthalmology
medicine.uiowa.edu/eye/path...
My mfERG was negative - this definitively ruled out MSA.
My OCT was abnormal, showed retinal thinning specific for ALS.
MS has specific visual disturbances and U Iowa or other neuro-ophthalmologist can help narrow the differential.
Can't get the comprehensive testing outside of the universities, U Iowa is top notch.
None of this was necessary, my reflexes are pathologic for neuromuscular disease; a reflex test is subjective when a doc doesn't want to validate an inconvenient patient's diagnosis. I've seen the ugly underbelly of the US medical system.
SE
Hi SilentEchoes,
Thanks for this info on Neurophthalmology. It helps with my previous post:
healthunlocked.com/parkinso...
I've been wondering if I have PD or MSA-P for a while...
I looked at your link, were you previously diagnosed with PD? 25% of the time the PD diagnosis is changed. I would get a second opinion and/or request a referral to a specialist, like a neuor-ophthalmologist.
See my reply to Jeeves19 on this post - reflexes are the definitive indication of which direction your diagnosis is headed.
SE
''a simple test is to check your reflexes - normal is PD, hyper is neuromuscular'': I think mine might be hyper, but not sure. What do you mean ''neuromuscular''?
Diagnosed with PD by 3 different movement specialists.
No tremor at rest, awful rigidity, muscle weakeness (especially after exercising, or just upon walking more than 5 min), no loss sense of smell, fast progression, symptoms started abruptly, REM sleep disorder. Bad response to Sinemet:
30 min ''on's'' with 700 mg daily Sinemet but can't even take 300 mg daily without side effects worse than the disease (both on and off painful dystonia, relentessness, insomnia, total loss of appetite, total constipation).
Parkie- when you say muscle "rigidity" do you mean spasticity?
You might feel spasticity either as stiffness that doesn't go away or as movements you can't control that come and go, especially at night. It can feel like a muscle tightening, or it can be very painful. Spasticity also can make you ache or feel tight in and around your joints and low back.
There is significant overlap in the symptoms of neurological disorders and they may share the same cytopathology.
ncbi.nlm.nih.gov/pmc/articl...
Neuromuscular disorders can be inherited or caused by a spontaneous gene mutation; some also may be caused by immune system disorders. [Spontaneous (somatic) gene mutation and autoimmune reaction is triggered by an environmental exposure to a toxic substance.]
Neuromuscular disorders affect the nerves that control voluntary muscles and the nerves that communicate sensory information back to the brain. When the neurons become unhealthy or die, communication between the nervous system and muscles breaks down. As a result, muscles weaken and waste away (atrophy).
Types of neuromuscular disorders include:
Amyotrophic lateral sclerosis (ALS)
Charcot-Marie-Tooth disease
Multiple sclerosis
Muscular dystrophy
Myasthenia gravis
MyopathyMyositis, including polymyositis and dermatomyositis
Peripheral neuropathy
Spinal muscular atrophy
Some symptoms common to neuromuscular disorders include:
Muscle weakness that can lead to twitching, cramps, aches and pains
Muscle loss
Movement issues
Balance problems
Numbness, tingling or painful sensations
Droopy eyelids
Double vision
Trouble swallowing
Trouble breathing
PD and ALS (and dementia) can occur at the same time, it's not always a case of either/or.
pubmed.ncbi.nlm.nih.gov/218...
Your diagnosis doesn't seem straight forward. Is it important for you to know more specifically what the degenerative process is? In all cases the conventional medical role is supportive. Are you content with this approach?
It's my opinion that our best hope for recovery is through nutritional intervention (Wahls protocol) and vitamin supplementation.
It is also my opinion that the cause of non-genetic neurodegenerative diseases is environmental toxin exposure. Acute exposure leads to acute neurodegeneration (ALS/MSA) and chronic exposure leads to a slower progression, PD and AD.
It is my opinion that the environmental toxin injury process is equivalent to cyanide poisoning. Google cyanide poisoning and Parkinson's disease. Cyanide is a chemical compound that can be formed by a multitude of chemical and thermal reactions and therefore is not restricted to a specific exposure, the most common is Glyphosate, an organophosphate chemical in Roundup. It is probable that ingesting contaminated food is a major contributor to the explosion in neurological disorders. Start with cleaning up your diet, you cannot supplement your way to good health.
SE
Kevin. When I was in the early stage of PD I was unsure of the diagnosis as Sinemet didn’t seem to work brilliantly. Docs weren’t awfully helpful so I researched hard. I found one nugget that showed a major difference between MSA males and PD: if you have MSA you always have erectile issues from the outset. I’ll leave that one with you buddy 🤔.
Yep, early autonomic dysfunction suggests something other than classic PD, but not necessarily the atypical forms and can be neuromuscular disease.
The free, easy, non-invasive way to distinguish between atypical Parkinson's and NMD is to check reflexes. Hyperreflexia is NMD. You know it when you see it, also as the condition advances the reflexes are lost - not so with PD. My mom had normal patellar tendon reflexes even after 20 years of PD and knee replacement surgery.
I just had major dental work yesterday for one hour. My oral surgeon woke me up 4 times saying, “breathe Kevin. Breathe Kevin.” This re confirms that I’m stopping breathing.
Molecule offers hope for halting Parkinson’s
PD Paradigm shift: Brain-First versus Gut-First Parkinson’s Disease: A Hypothesis.
Mucuna pruriens in Parkinson’s
