I see so many people here on HU asking about their progression and if it's normal. I believe that PD is used as a garbage can when the diagnosis is uncertain and the patient demands and answer from the doctor. Later, when there is a poor response to drugs, people start to question their diagnosis. There is considerable overlap between non-genetic neurodegenerative diseases and it can be hard for the person to know.
This forum is a wonderful place to seek support and learn from the army of independent researchers on ways to improve our lives.
If something doesn't seem right, get another medical opinion - as many as necessary to feel confident that you know what you are dealing with.
This is my cautionary tale:
From my experience, early in the process of developing a neurological disorder there can be many symptoms that overlap with other diagnoses. My own symptoms included tremor in my hands, but not at rest. I now know the tremors are a result of muscle exhaustion. I lost my arm swing on the left side first, I now know this is due to shoulder muscle weakness. I developed muscle stiffness that I now know is spasticity. I began to lose my balance doing simple things like stepping into my shoes. My postureography was severely abnormal. I was told that I have ataxia, but not which type. My Romberg sign is positive, it's sensory ataxia. Balance testing showed I could catch myself falling forward but not backwards. This occurs when trying to sit down. My reflexes were brisk, then very brisk and now I have crossover reflexes, when the right patellar tendon is tapped the left leg responds. In Parkinson's disease and MSA the reflexes are normal. I have autonomic dysfunction, which occured early in my neurological disorder, whereas my mother who had a PD diagnosis, stated her dysautonomia happened much later. I had hypertrophy of muscles that looked like muscular dystrophy and I had fatigue that looked like myasthenia gravis. I didn't see fasciculations in my muscles at first, but when I learned what to look for, tongue fasciculations were obvious. My Hoffman sign and jaw jerk test were positive, but early on the neurologists didn't look. I developed a form of smell loss that is specific to the central limbic system and chemical sensitivity to solvents and fumes. I developed problems with what I thought was my depth perception. I now know it is not a vision issue it's a central processing disorder. This along with smell loss is a harbinger for dementia. I developed severe insomnia, I once didn't sleep for 48 hours, my polysomnography revealed that I didn't achieve REM sleep and I have central sleep apnea. I have shortness of breath and thought it was a heart problem, I now know that it is fatigue of my diaphragm. I had a 1.5T MRI, and a spinal tap that ruled out Multiple Sclerosis. I had a 3T DaTScan that showed *cerebral atrophy (abnormal for my age) but no substantia nigra degeneration. I aggressively and relentlessly pursued objective testing and diagnosis of each symptom after I was given the medical equivalent of the Scarlet Letter - a somatoform disorder diagnosis. The movement disorder specialist knew I didn't have Parkinson's disease. I requested a neuropsych evaluation to establish a baseline, I later learned that the datscan was being used in an effort to support a schizophrenia diagnosis, it was negative. I had genetic testing, the Mendelian Parkinson's genes were negative but for one missense mutation, ATP13A2 (Park9). I was told that all EMG/NCS, EEG and EKG tests were normal. I was told my muscle biopsy was normal. I was told my chest xray was normal. They couldn't find the cause of my neurological symptoms. I received my diagnosis in July, 4 years after developing symptoms of a neurological disorder (injury). I'm pretty advanced now, although doctors comment that it's not obvious.
Can you guess what my diagnosis is?
Leave your guess in the comments section. No cheating by looking at my other posts.
I, for one, haven't a clue, but I marvel at your tenacious perseverance. It's truly refreshing. I hope you're proud of what you have learned and accomplished.
Can we ask a question? If yes, I'd ask: When did you lose your sense of smell? Early on? Abruptly or gradually? Also, what was this schizophrenia hypothesis based on (even though they didn't tell you that's what they were doing that test for)? And about that, have anyone tried you on a medication with the phrase "zine" at the end of it, and what was your body's response...that's about molecules with lots of nitrogens in them.
I am challenged and have to look up just about every term you've mentioned.
If I'm breaking a rule with the questions, ok, just tell me that's not on. Horrible as your experience and situation has been, I'm just trying to make it feel interesting, not insensitive...I am beginning my own guess, and it isn't very nice. I'm really sorry you have had to go through this in your life.
There's at least one person I would guess is on the path to qualified to understand, that drug scientist sharoncrayn. We'll see if she has something to say.
Smell loss happened very early, it was one of my first symptoms. It was insidious onset as the nerves in my olfactory bulb deteriorated. A specific type of dementia is part of the spectrum of my diagnosis. I'm not demented yet, hopefully never.
Soon after I was told this was all in my head, I asked a different neurologist if smell loss was neurological and he said it is, so off I went to see the famous expert on smell and taste, Dr. Richard Doty at UPENN. I was sent a questionnaire to complete and things started to click for me about my chemical sensitivity. I did the 40 item scratch and sniff test, I think I missed 3. AD and PD patients get about half right. Where I failed was identifying complex smells, this was a non-invasive way to challenge the limbic system. Then my emotional lability made sense.
Regarding schizophrenia, when I got to the movement disorder specialist I was a little too well informed about causation. It seems he was trying to discredit me by diagnosing me with paranoia, hence the DaTScan. The somatoform diagnosis was described as subjective by the neurologist who ultimately diagnosed me correctly.
I have avoided pharmaceuticals, gabapentin was prescribed for unknown reasons. So was hydrochlorothiazide. Gabapentin is toxic to mitochondria and the diuretic can destroy my kidneys.
I no longer believe in medical altruism, with a few exceptions. I hope that by sharing my experience it will help inform other people who struggle to understand what they are experiencing in their own body and why. I think it has been my saving grace that I keep asking why and search to find the answers.
SharonCrayn weighed in on a different post regarding causation, she said I'm screwed. That's not very encouraging. I'm not going down without a fight.
THANK YOU! First, for sharing this article. It exactly describes what happened to me. The movement disorder specialist planted a seed of doubt with my husband, who desperately wanted hope that we weren't going down "that" road. It also tainted my medical record, and this has been challenging for me to overcome. Second, thank you for introducing me to dailykos.com
This is going to sound way out there. Sorry about that if I am so far out on a limb.
I am going to assume you were once a farm worker or something like that.
My guess: you were poisoned with a combination of ag chemicals over time and these have to do with excess nitrogen bound with various things, sometimes sulphor, more often clorine, and combined with simple carbon (i.e., organic) compounds that yield up lots of, too many of, lots of free electrons that shut off your ability to feed your cells. Excess nitrogen and simple (i.e., reactive) hydrocarbons often result in compounds heavy in nitrogen and very reactive, which react with oxygen...too many nitrogens combined with a carbon means way too many electrons available to punch through things, especially distract oxygen...and in doing so, like magnets, stop your cells natural feeding process, they starve your blood from feeding just about every neurological system of the energy it needs, and those cells in turn, depending how sensitive or vulnerable they are, in their various systems, over time die, those most vulnerable go first, but everything needs oxygen and the foods delivered by blood, so that suggests many systems eventually affected.
The tipoff was the smell, your genetic tests didn't seem like much. Nose is the only sense system which are actually brain cells, just that they are in your nose, and so they are uniquely direct hook into your "rhine-encephalon." In other words, incoming from the outside directly connected to brain nerves.
Naked volatile chemicals that are heavy in nitrates, have a large reactivity because of all the extra carbon connections and nitrogens says to me that they are basically versions of nerve killing agents called cyanides, and since your nose is a direct link of unprotected brain cells to the outside, you got them from the outside. Says to me heavy cyanides means commericial herbicides, in the family of cyanides. Or, go back 100 years, what we now call the early chemical warfare cyanides. Zyklon B and the other WWI nerve gases based on what were basically cyanides. Now we call them broadleaf herbicides.
I am so sorry if I am right, but like I said, I am way way out there.
You are spot on. I did indeed experience an acute pesticide poisoning. I was an organic farmer, my neighbor and their spray contractor drifted when I was outside. I couldn't escape the the chemical cloud and inhaled the toxic brew. There were multiple products in the tank mix. Everything they did was illegal. Because the department of Agriculture was focused on covering this up, I didn't get treatment. I didn't even know evertything I had been poisoned with for a year, after I already had neurological symptoms. I have developed a named neurological disorder. I've tried to find someone to legally represent me with no success. Apparantly you cannot win this type of lawsuit in the midwest.
No need to apologize. If this can happen to me, it can happen to anyone. I want to raise awareness. Unless a person has a genetic neurological disease, these neurological disorders are the direct result of environmental exposure to toxins. I believe that if it can be caused than it can be reversed. I may not regain all my function, but hopefully it can be managed as a chronic illness instead of a death sentence.
The nose to brain pathway is well known. I would be grateful for any suggestions you have to offer about what could be helpful to me.
Hello there, I find your post interesting in many ways. I am a 71 yr old female from UK. I was born and grew up in industrial east Manchester. I met an agricultural student while I was teacher training and we have been married now for 48 yrs. I was diagnosed with PD as part of a nerve trial after a couple of years wearing my GP's patience.with questions about my perceived loss of use of my left side. There was nothing to see yet my strength was slowly slipping away in my arm and leg.
The nerve tests revealed no damage to the neurons or sheaths which the consultant responsible felt left PD as the most likely diagnosis. He suggested my husband and I visit him in a fortnight to give us time to do some research. I was relieved as it could have been worse and it gave me a peg on which to hang my symptoms.
This was my first break: my consultant was a geriatrician not a neurologist or movement specialist. I was the kingpin in this situation , my needs drive the treatments etc and he gives me quality time!
That said back to your post. Early in my marriage I was involved in sheep dipping and crop spraying both using oregano-phosphates.
Some of us are better metabolizers of OPs than others, we have more reserve when younger. Repeat small exposures over time set us up for neurological disorders later in life. An acute exposure can completely overwhelm our ability to detoxify.
Thanks for that. Richard has long maintained the belief that those small intermittent exposures to OPs were the cause of my PD as opposed to his regular doses. There is no history of PD in my family on either side.
Thank you both. This is extremely interesting and helped me make a connection.
I am a chemist. I had an extremely sensitive sense of smell. It was sort of my superpower. Chemists work with reactive compounds, though we take great care not to expose ourselves. There was a time I was working with cyanide compounds, and I could always smell them, even when present in trace amounts. They have a peculiar odor.
Loss of smell was my first symptom. It probably occurred 10 years after the chemical exposures. I would think if my problem was caused by chemical exposure, I would have been affected immediately. But, perhaps not.
I do also have some chemical sensitivity — to isopropyl alcohol (“rubbing alcohol”) of all things.
This is most intriguing. My sense of smell was normal except for a negative experience discovered in Biology lab experiments breeding flies for genetics. I was always the one to feed the larvae in a pneumatic trough of sawdust because I couldn't smell the rot or whatever which was making others heave. I also had a topical reaction to the agent in town gas used for Bunsen burners.
Your response "a death sentence" gives me a pause, and wonder if you were told you have an ALS, which I ruled out given "EMG/NCS, EEG and EKG tests were normal" and not limited to motor neuron issues.
I was certain of my altered sense if smell within 4 months. Looking back, I was also experiencing muscle cramps, my DIL who is a RN said I needed to add more salt to my diet. I had a fall a month later, neurological symptoms stared to snowball from there and I began to get really concerned. It was at about the 6 month mark that I connected my symptoms to my poisoning. There is certainly a temporal relationship. I thought it must be PD, it's what my mom had. I didn't know what the early symptoms were because she refused to talk about her PD with anyone.
I don't believe my diagnostic tests are negative. The providers won't release the tracings to me for a second opinion. The doctor who made my diagnosis based it solely on my clinical examination, which is all that is required for a dx. The pulmonologist who referred me to the neurologist, didn't need pulmonary function tests to know that the problem wasn't in my lungs. The other doctors were mining my health insurance and bankrupting my family, with no intention of confirming my neurological injury.
You are correct, I have the syndromic form of ALS. From what I've read, Parkinsonism is a description for MSA and ALS plus syndrome. I am upper motor neuron dominant, this suggests a slower progression, theoretically.
We all need to talk about this. Together on HU and publicly. ALS was not on my radar based on the misinformation online, even from the ALS society. It is a spectrum that ranges from Classic ALS to Frontotemporal dementia.
There is a relationship between ALS and PD. The most evident is dysfunction of the serotonergic system, which is controlled by the hypothalamus. The nose to brain pathway leads to the hypothalamus.
My Park9 polymorphism is a vulnerability gene for ALS. It requires a triggering event(s) to develop.
I don't say this to hurt anyone, I want to raise awareness that we can have more than one neurological disorder at a time. I think it's import to know this so we are more effective in advocating for the support we need. To often people are written-off as a lost cause. This has been my experience.
I'll write a closing response sometime this weekend and provide some links. Peace and love to you all.
4 years since the onset and "not obvious" according to the Drs certainly rules out the fast progressing type.
A while back, I watched the entire ALS video logs by Kevin O'Donnell on YouTube - it was heart breaking... We're aware of the genetic type due to Anthony Carbajal and his mother. I'm also aware of the toxin induced type due to Guam natives' ALS prevalence due to their favorite delicacy fruit bat that eat poisonous nuts from the indigenous cycad tree that live in symbioses with nitrogen fixing cyanobacteria with its neurotoxin BMAA.
I watched these YouTube videos too. There were sad nights when I stayed up late trying to figure out what was happening to me. It was Kevin's video that showed me what fasciculations look like. I can't image the pain of a mother with ALS finding out her son also has it. I don't have ALS genes, I'm the first one with this diagnosis, but there is a thread of neurological disorders running through my family tree. My sons now have a 50% chance of developing ALS. This is unacceptable to me as I'm sure it would be to anyone else - particularly when I know it's preventable. Sometimes I feel like I'm screaming and no one hears me. The propaganda around these toxic chemicals is so pervasive, how can one voice be heard?
You mention you "have developed a "named" neurological disorder". It would help some of us, who are going through a similar process with variable symptoms, to have the name.
I surfed in pink toxic water off the California coast in "66, lived next to a field where crop dusting was going on, was sprayed from infancy to puberty with DDT bug spray, breathed direct toxic vapors at work while coating discs with …??, played in a farming area where pesticides were stored in open bags in the milk room....(my mother told me), my father sprayed everything he grew and we ate, a fan of good looking veggies. I'd say I am a good candidate for neuro smorgasbord. Your experience has made me think of how to approach this in a better way with neuro's. Thanks!
The named disease is ALS, Amyotrophic lateral sclerosis, a devastating fatal disease.
One of the most definitive and important test to diagnose ALS is EMG along with the more common NCS test, which she was told were negative, and it seems she never got a confirmation of the test results to this date. Normal EMG results often get diagnosed as PLS (primary lateral sclerosis - lower/spinal motor neurons stay intact and more benign without muscle wasting) but doesn't completely rule out ALS developing later. Other than that, ALS can only be diagnosed by ruling out other mimicking diseases and symptoms and proof of progression.
Great guess! I live in an endemic area, and was tested for lyme disease 3 times, most recently by a functional medicine MD, numbers are very low, conventional medicine would call it a negative result. She said it's like a pregnancy test, either you are or aren't. Not willing to disrupt my gut with antibiotics at this time.
I thought it was MSA (it's not), I went to see an environmental medicine MD who diagnosed me with Parkinsonism, that was too vague for me so I continued to pursue a more definitive diagnosis and test each of my symptoms. I don't have PD.
Interesting theory. Are you familiar with PPPD? It was originally a psychiatric diagnosis. Now it's a functional disorder crafted by the exceptional minds at Mayo Clinic and used to discredit inconvenient patients like Gulf War Veterans who have actual neurological injuries similar to mine, many of whom develop my diagnosis. They are dying-off and the rate of this neurological disorder is decreasing among GWV.
PSP came to mind only because of your falling backwards. I hope not. I am going through a similar process of trying to find out what I have since I have been told it's not PD. They forgot to tell me I have dystonia, a general type that is multi-focal. My tremor is dystonic tremor not ET. I guess they have their job cut out for them because there sure are a variety of neurological hodge podge.
I I suppose the doctors are waiting and watching for progression before they give you a diagnosis. I told one neurologist that I'm either going to get better or I'm going to get worse and put him on notice. It is a clinical dx and electrodiagnostic tests aren't required. I got my diagnosis at Rutgers and haven't gone back, still they keep harassing me to come in for an EMG. I will never subject my nervous system to this assault again. I developed new fasciculations in my abdomen after the last one.
I also put my doctor on notice that if it all gets more noticeable ?? (dragging my leg occasionally isn't enough), then I will then ask to see a neurologist. Breathing, choking on nothing and swallowing is more concerning to me and pushing my voice (a worsening symptom) or not talking naturally is all connected to muscles, diaphragm being one which is daily very stiff. A bit scary but I'm getting tougher in my old age. I thought it was MSA as well but it could be anything. Your post really made me think. Good thing that muscle still works. Yours works very well!!
Hugs to you! I would seek out a neurologist who doesn't require a referral. Or just tell your doctor you want a referal to whichever neurologist you choose. That's what I did. I think knowledge is empowering. Good luck.
You sound like you have an extraordinary brain, regardless of any diagnosis- but I’m assuming by the attached link that it’s APD, not PD?
But given my own experience with neurological issues so far; I would have actually guessed MSA. I really hope therefore that it isn’t, so any other diagnosis would be a blessing, because MSA is hardcore.
But then I’m guessing regardless of any label, your symptoms are hardcore.
But look at you?
You have prevailed regardless, with dignity and dogged determination to uncover the truth of your malady.
I’m waiting to see a movement disorder specialist, but it seems almost academic now.
Ultimately we all do the very best we can, but can only be guided by the alleged prognosis and do our very best with that knowledge, and the knowledge of wise kind communities like this.
It doesn’t however alter the reality of living with it day in day out does it?
And finding strategies to adapt and accept...
Regardless, I just wanted to say you have a wise, extraordinary brain and there’s no denying your composite intellect- so whatever happens, you will prevail
Peace n light and angelic delight wished for you this day lovely ✨
I don't have fibromyalgia that I am aware of. It wouldn't be surprising if there is a connection to my diagnosis, who knows, maybe it's a precursor, since neither are recognized autoimmune diseases.
I'd guess on a parkinsonism due to some sort of toxin in the basal ganglia - no resting tremor but action tremor/dystonia with no neuron degeneration of dopamine producing cells in the substantia nigra but with trouble releasing dopamine to your synapses with your movement disorders. You'd not be responsive to l-dopa therapy but may do well with regular high intensity exercise for GDNF (see the last article). I suggest you test for Hair Mineral Analysis to rule out toxic exposures.
Also try supplementing either TTFD or high dose hcl thiamine along with methyl b-complex (address transketolase transport and methylation issue for deficiency) & magnesium if not already.
With all due respect, we should stop this wild goose hunting now. I am sure that you started the thread in all earnest as a joke and a somewhat confusing attempt at showcasing the complex intersection of so many complex neurological experiences and symptoms and the difficulties that doctors face in diagnosing the situation.
However, it is concerning although heartwarming to see how many members of the forum are genuinely trying to “help” you with their thoughts about theories which no doubt involve a lot of research and thinking.
Asking a group of non-professional and non-medical people to engage in differential diagnosis that doctors spend years in training is fun at first but that is all that is : fun and games.
Don’t you think that it’s time to stop now that you have a lot of responses. Hopefully it satisfies the curiosity that you had about how the human mind works?
In the ideal world doctors would make the diagnosis. But what does someone who has no satisfactory diagnosis do? Perhaps the doctors can't find the time, or perhaps the doctors can't be afforded, or perhaps the problem is too difficult. In these circumstances it seems to me reasonable to throw it open to a wider audience. What is there to lose?
I'm shocked and hurt by your words. This is no joke and I never intended it to be. I'm trying to help others as much as they are trying to help me. I'm learning too. I am not seeking or giving medical advice. My intent is to raise awareness and start the conversation about the interconnectedness of neurodegenerative disorders.
It's a difficult journey for everyone with PD, and they are not qualified to offer diagnoses. They can only relay their personal symptoms and you can make the comparison. Our MDS at Vanderbilt explained in detail the different types of Neurodegenerative conditions. My husband's diagnosis was PD which was already confirmed by Mayo.
Thank you for being strong enough to post on this site. I feel for you and since recuema clarified the name as ALS please know we're 100% in favor of hearing from you. It's opened my eyes as to what affects people and how they still function so well in spite of it all. I will have more empathy because of it.
I agree with the diagnosis, there are probably comorbid neurological disorders. They say life expectancy is 3-5 years after diagnosis, I had all the symptoms in 4/16 when I first sought medical help and could have been diagnosed then, although I didn't receive diagnostic confirmation of motor neuron disease/als until 7/19. They could be right, but maybe not. Time will tell. There is a young mother with ALS who first had symptoms about the same time as me and she is in a wheelchair. It's a tragic story, she was diagnosed shortly after her 3rd child was born. We should never compare ourselves to others, I clearly have a slower progression but it could change.
There are about 50 documented cases of recovery from ALS (Bedlack @ Duke). If they can recover, why not me? And why not someone with PD or other neurodegenerative disorders? MS is also a neuromuscular disease, there is a doctor (MD) with multiple sclerosis who regained her function, she still has MS plaques but is no longer affected by them. Her name is Terry Wahls and she has a book in print and YouTube videos. She said there is no reason to think her protocol would not be helpful with ALS.
I believe my lifestyle has a lot to do with my slower progression, but clearly there is a wildfire in my nervous system, and if I don't find a way to put it out......thankfully I have finally found some medical support from a MD in functional medicine. I'll outline my protocol when I have some evidence it's working, these things are required in my opinion: Ketogenic diet restricted to 5% carbs, absolutely no dairy, gluten and refined sugar, organic whole food (there are a lot of refined organic products that should be avoided), a good organic multivitamin and optimal vitamin d levels to start. Detoxification needs to be part of the program. So does exercise and emotional wellness. Inflammation is the #1 enemy.
Most people don't have a reason to look for a link between ALS and PD, but I do.
Have you ruled out atypical PLS and why? Any sign of muscle wasting or other lower motor neuron issues? I hear your sentiment to EMG test but wouldn’t knowing the proper test result ultimately help in the long run for yourself and your family?
I tried 80/15/5 keto for a while but that’s pretty hard core and I personally believe not sustainable for very long term. You’ll notice your glucose level climbing up uncontrollably after a while with physiological insulin resistance, and I believe this is due to gut dysbiosis that must be helped with carb modification along with mega probiotics (microbiome is linked with neurological/metabolic symptoms) and thiamine (Keto depletes B1). While on the diet, be sure to add adequate organic spring greens(least oxalates), at least 100g a day for the majority of your carb and/or loosen up your carb % to add some blueberries in divided portion for phytonutrients. I found Cronometer very useful.
Also add turmeric/curcumin/theracurmin - I add organic turmeric very liberally to food (esp fried egg) along with lots of black pepper for pipeline- great anti-inflammatory with a few validated ALS reversals known with curcumin. vimeo.com/284788558
Be sure to also look into supplementing iodine (carefully) along with selenium, molybdenum along with trace minerals.
Both upper and lower MN signs. I had thought about about PLS because I gained about 40 pounds when my thyroid gave out. I have lost about half of it. Thank you for the advice on supplements. I have hyperinsulinemia with normal A1C. All of this circles back to hypothalamic dysfunction/injury. I'm grateful for your support.
Exercise and gaining more muscle mass (strength training) will increase insulin sensitivity.
It's easier said than done, but it will help to avoid ruminating over what was done and try to move forward, even if through self hypnosis (books or audios through Amazon) and meditation to reduce the stress and anxiety. Stress can halt all progress if not managed.
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