This is going to be pretty long, Basically around 2 yrs ago i had a concussion. In my life i had a few head injuries. I am in my mid 40's and have worked out my whole life, and pretty much eat healthy. My one vice was drinking kind of heavy every weekend, which i did up to about 2 yrs ago. Since then i may have like 2 a week cause i don't feel as good as i used to doing it. About 4 mths after injury i noticed all these symptoms come on. Except for dizziness when i wake up in the moring this was slight but ongoing. I noticed finger tremors when i was typing, but at rest the or flat they didn't. Then ED hit me and my urinary frequency picked up with dribbling after. I also noticed my mood changed. The thing about the ED is my sex drive was crazy high before this. This all lead me to beleive i may have PD, but then i did more research and found out ED is not common early in PD. This made me research a far more horrific brain disease, MSA.
As a few more mths came more symptoms presented. I had coat hanger pain, small balance issues, more depression, lower libido , cold sensation feet and hands, and BP fluctions, mainly high BP, last i developed Raynauds. My mom even had requip for Restless leg syndrome so i tired a low does which made me feel better and my libido lifted. This lead me to beleive it chould be PD.
I have since been to 3 Neuro's and 2 Movement Specialist. 2 thought it maybe was Early PD. I jumped the gun and got umblical stem cells, yes i realize there no cure, and the only thing that may slow it exercise. Yet i felt better and many symptoms are far less. Lastly i made an apt with The Mayo Clinic. The doctor who examined me was the head of the Neurology Dept, and taught people how to catch PD, Msa, PSP and other brain diseases early. He did not find one feature indicating i had PD, yet i was more worried about MSA, and he knew it. Basically cause my symptoms were autonomic. So i ran autonomic test, Sweat, Tilt, and others. All test came back normal. I then asked him how sure was he i didn't have MSA or PD, and he said 99%. I thought that may be a bit cocky, but i was happy. I mean i read stories how people have symptoms for yrs before Dx. He said i had small fiber neuropathy, with arthritis in my neck. He seemed to think past drinking maybe a factor, but i mostly gave it up a few mths before symptoms. He didn't seem to think injury was a huge factor.
Lastly, i have been having pretty good days, with a few days or hours i feel like shit. Not like 3 mths ago when ever night was bad. I heard people say PD is like a switch in your head that goes off, and it never comes back on. You never feel normal again. Well, i really don't feel normal anymore. I loved working out before, music mad me pumped. Now i workout out of habit. I always been a fast runner and i still havnt't slowed down. I run 5 miles every other day, in about 30 min. I don't have any movement problems my balance is Gotten better, yet it's only been 2yrs. I sorry i am on here just trying to figure out what people think. The only test i haven't got was DATscan cause insurance doesn't cover it. Yet if i feel worse i will get it.
Written by
Girth10
To view profiles and participate in discussions please or .
I think Dr. Mischley has a dog to test for PD also.
If not that, there is a forum member who recently mentioned a skin biopsy type test that is supposed to be fairly accurate also. Perhaps they will see this and chime in?
" My one vice was drinking kind of heavy every weekend"
When I read this, the first thing I suspect is thiamine deficiency that can lead to dysautonomia. It's very easy for Drs to miss B1 deficiency in your brain, which does not correlate with your serum test result, and I bet your Drs never tested even that.
I suggest that you try supplementing TTFD or Allithiamine to get it past the BBB.
Also supplement magnesium (L-Threonate) since it's a required co-factor.
Try the Allithiamine instead, in case you're genetically compromised to absorb the standard B1 through inefficient thiamine transporters to get it into your brain. Start slow - 50mg for at least a few weeks. Watch out for feeling worse before getting better through paradox/refeeding syndrome.
One more thing - you may want to look into a good methyl (active) B vitamins complex such as Pure Encapsulations B-Complex Plus. B1 is a team leader and you need other vitamins to support the whole cycle.
You're not going to get a more accurate diagnosis from various random dudes on the Internet, based on the information you provided, than what you got from the head of neurology at the Mayo Clinic, but you know that.
If it were me, and the head of neurology at the Mayo Clinic said I did not have PD, I would believe him. Further, if he thinks many of your issues are tied to years of heavy drinking, I think that's reasonable.
Alcohol is a depressant, causes depression, causes ED, causes loss of libido, causes tremor, causes everything you described.
It's possible you don't have anything (except peripheral neuropathy, maybe, but that's not worth fretting over.) It's possible you just wrecked your health drinking and the good news is you probably can recover from that.
To me, the most important aspect of what you said is that you're starting to feel better, so I would take my cues from that and keep on doing what you're doing, i.e., exercise, especially aerobics/running, eating right and quit drinking, totally.
I would just like to say I admire u, your attitude and how you have dealt with your illness. I read your profile. My Grandmother had PD, and my cousin at a young age of 50, was recently diagnosed. She is a fighter herself like many with it , and on this forum. The fact you want to help others, live a better life speaks volumes of your character. You chould have just ignored my post.
You see i never was a paranoid person about injuries or symptoms. I never really went to doctors when i got hurt. I realizes it's dumb but we are men, lol. Your right i should listen to the Mayo Dr. I feel bad posting when people are already DX. Yet 2 of them said it chould be early PD. One put me on Requip just to try and Mayo Dr said they never should have. It made me feel better at first then was no longer effective which was weird. Yet i had no ill effects coming off of it after 2 mths. When i heard people with Restless leg syndrome had a horrific time getting off.
I agree with your thoughts on supplements and i do think most pharmaceuticals cause more harm then good. A drug may stop tremors, but it causes 7 other things. People need to realise pharm reps push drugs to Doctors to prescribe. That big pharm has billions of dollars and that's all the really care about. Are healthcare system shines in emergency care, but drops the ball in chronic illness. I do beleive one brain diseases will be reversed, but i don't think a drug will do it. I beleive a combination of factors may. Accidental finding by self experiment or Stem cells replacing neurons. Ways to stop it before it can start. The only thing that slows it down is exercise and you don't need Dr's for that.
I did get a MRI which my Doc at Mayo said i had small cerebellum shrinkage, but it wasn't' significant enough to raise flags. Which i know drinking can damage. I look into the other stuff. Thanks
A neurodegenerative pearl - 10 years is the rule for a temporal relationship; ie head trauma within 10 years of onset....outside this window trauma (physical, emotional, chemical) depletes cognitive reserve and sets the stage for neurodegeneration. All organs and systems in our body have some ability to heal.
Cognitive reserve (CR) is the brain's resilience to injury. When CR becomes depleted we move from prodromal to symptomatic. This can happen quickly or slowly.
This ties into the epidemiology of disease and how neurological injury occurs over time in certain occupations such as farmers who use pesticides. Their chronic chemical exposure is too small to deplete cognitive reserve initially, but eventually the neuro-degenerative dysfunction from chronic injury sets in.
An acute exposure will quickly overwhelm the ability of the body to detoxify and the temporal relationship is apparent.
Parkinson's disease is idiopathic, in most cases a temporal relationship can't be established. If a temporal relationship can be established than it is called parkinsonism or other named disease - speaking from my own experience.
There's a steep learning curve with this shit that some of the more experienced members on this forum may have temporarily forgotten. Practice compassion folks, it's why I didn't leave the Parkinson's group when my dx was refined from Pakinsonism to Motor Neuron Disease (*ALS, medical semantics which also denies knowledge of causation).
My research lately has been the relationship between PD and ALS. They are related.
It’s important to note what’s said here. Avoid any amount of accumulative or acute toxic exposures and oxidative stress if possible/identifiable even if the amount seems minuscule or assumed to be benign for the moment. As your body ages, you’re gradually under more stress naturally and you don’t want to hasten this or put things out of balance through additional burdens/toxic contributors, and it is now known that certain populations are more vulnerable due to genetic SNPs along with compromised detox pathways - meaning, just because something doesn't affect someone else right off doesn't necessarily apply to you the same. It’s seriously unfortunate that some folks just don’t seem to get this until too late, or even then.
In my case, I simply didn't know and had no reason to investigate - until I was poisoned. I try to tell everyone I can, but most people, including my family and my adult children, don't want to know. It breaks my heart that they won't listen to me. At least at HU, people are interested in what I have to say and maybe I can disseminate information to a wider audience. We're stronger together.
I have all 3 - PON1 polymorphisms (poor detoxifier) and 2 - MTHFR defects. I also have one Park9 variant - it is a risk factor for ALS that is benign unless triggered by hypoxia. I can only conclude that I experienced cyanide and organophosphate poisoning from Roundup (toxic, hypoxic encephalopathic process on SPECT); cyanide is toxic to the hypothalamus - the root of autonomic dysfunction.
I had a front row seat to observe my Mom's Parkinson's disease, and I never thought it would be my fate, until I was poisoned. My mom thought the head injury from a car accident caused her PD, but it was outside the 10 year window for a temporal relationship. The house in Florida was on a 90 day spray schedule with insecticides - the chronic pesticide exposure did have a temporal relationship. At the end of her life I witnessed neuromuscular dysfunction.
I'm an outlier, it's been almost 6 years since my acute exposure and poisoning, but there were at least 6 chronic pesticide exposures a year for 11 years from the field across the road (100' from our front yard) that included Roundup, paraquat and neonicotinoid seed coatings in amounts too low to cause symptoms. The EPAs gold standard states that residential proximity within 1000 meters (.6 miles) of a pesticide application constitutes an exposure. Does anyone else know this? Anyone with a MPH (masters degree in public health) does. Neurologists are well informed of the toxic effects of cyanide and OP poisoning and they know that their patients, without exception were poisoned, and instead of treating our poisoning, they push drugs that cause more poisoning but might temporarily alleviate neurological symptoms as we slowly die. I'm pissed off by this.
Medical dogma states there is no known cause for ALS, which is universally fatal, and the only established risk factor is smoking (cyanide). Classic medical speak blaming the patient and invalidating legitimate risk factors.
I thank God for the opportunity to gain the knowledge to reverse engineer my poisoning - I know what it is that I know. I need to learn how to stop the cascade, but fear that my life will be cut short by coronavirus, I'm on a ventilator part-time now. There's no way in hell I'm going to get medical care if I get infected and develop pneumonia.
PD, ALS and Alzheimers are related, they are genetic variations of environmental toxin exposure. There are documented cases of ALS recovery, why has this not happened with PD? I believe it's because people are told that pharmaceuticals can manage the symptoms and they can live with PD and so there isn't a sense of urgency, where with ALS, people know the end is in sight. Most people with ALS are struck down too quicky to put up a fight. But not all people, and I will not go quietly.
I respect the opinions of others even when we don't agree. We are at different points on our journey, but we aren't alone.
I get heavyhearted whenever I hear your story. None of us knew of the ubiquitous toxins we've been exposed to until symptomatic. Only a few eventually figure it out if determined and resourceful enough to decipher the cause one after another, and then we realize we're living in a very dangerous blissfully ignorant world. I appreciate your voice, and even if we may perturb others in our effort to enlighten, someone just might be saved by doing so and then it would be worth it. You "rant" all you want, we're here to listen. God bless and be well.
Thanks to both responses above , that clears it up for me. Medical jargon hard to understand sometimes. U must be intelligent . I beleive people with brain diseases should stick together. Most of them have a common link of protein misfolding, and all of them can't be stopped.
I would assume that you have a fatty liver and do the research on how to fix that i.e. check out youtu.be/l3qgcMviHtU Also consider the possibility of B12 deficiency e.g. youtube.com/watch?v=OvMxJ6G... - Sally Pacholok
I appreciate it, i got some test that showed a bit of liver inflamation. I am taking a more healthy approach for my liver. One big thing is not drinking. If i could take back some of the stupid things i did i would, lol. Another thing i wouldn't' have played football.
You might want to research what types of toxic chemicals and pesticides you may have been exposed to in addition to the alcoholic damage and B vitamins depletion.
Yes, i work in a warehouse for like 4 yrs i wad exposed to carbon monoxide. As far as others not sure. My dad was in Vietnam, may have been exposed to agent orange. As far as alcohol it was a bit of everything. Yet i say mainly beer, which i assume has toxins from wheat and barley.
Keep narrowing it down. Also, be sure you're only drinking/cooking with purified filtered water - many bad stuff in the tap water. As others advise, quit drinking at least for a while, keep exercising, eat clean (no sugar), and supplement TTFD along with other supporting nutrients. I'm not sure if you had your thyroid function checked out, but also look into supplementing Lugol's iodine, very carefully and slowly (only 1 drop of 2% in your coffee/beverage for 5 days a week + selenium). I believe you will get better.
I thank you for all the advice and articles. I think ur right on the sugar, i really keep that in moderation. Yet i love chocolate, but i try to eat dark with less sugar. I will try some of your recommendations. Thanks for the positive post.
Virtually every brand of beer, wine and spirits are contaminated with Roundup. There are a few organic choices available, but it's best to avoid them altogether.
Thanks, i did get the test every guy loaths, lol. I got it six yrs early. They really didn't say much so i assume my prostate is fine. It's just weird cause 2 yrs ago i was only peeing like 2 to 3 times s day. Now i go like 5 to 9 times a day depending on what volume I drink. The urgency picked up also. I know in PD this usually not the case until later stages. I plan on getting more detailed testing.
Urinary urgency along with ED, are symptoms of autonomic dysfunction. The root cause is hypothalamic injury. Not everyone who drinks gets liver disease. I didn't abuse alcohol but developed NAFLD that has progressed to NASH. This is also caused by injury to the hypothalamus. Don't be too hard on yourself, your choices weren't the healthiest, but it probably wasn't what tipped you over.
Thanks, I appreciate i know i have some kind of autonomic dysfunction. Lower body temp Bp problems, urinary, and some others. Interesting i never herd about hypothalamic injury. Could possibly be linked. I also of heard of TBI symptoms lasting years sometimes. I still feel like i have done some kind of damage to my dopamine system. They way i don't feel the effects of music, libido comes and goes, some supplements made me feel good before don't anymore. Caffeine still works but less, exercise used to give me a high, and know just little spurts. My energy still pretty high, not as as used to be. I take supplements like Lions Mane, NAC, NAD + and others to help mitochondria function. I also fast 16 hrs, greens, coconut oil exercise I even do intanasal insulin not everday which i know may not be safe. The say it may be good for brain injury. After doing it my mind feels better along with mood and i feel more motivated . I told the Doc, something was wrong with my dopamine. He looked at me all puzzled, like how would u know that. When you feel a change u know it. It Like going out on a Sunny day and not feeling the same rush of chemicals. The sun hitting your eyes is one of the biggest dopamine releases . It's not depression and I know it. Is it damage from alcohol? Why i already pretty much stoped before all the symptoms came. This is why i think it was head injury or a mix ,cause, symptoms came on 3 mths after injury. I had not one symptom before this. I also realize that D2 dopamine receptors are involved in your reward system. Hince, sex, drugs and Rockin Roll. I pretty much quit alcohol for over 20 mths. Wouldn't these receptors have healed by now? This is what leads me to beleive it's worse.
Well i going to stay positive and just focus on trying do thing better for my brain. I mean this site is the best place to get advice about helping brain health. I studied a lot about supplements and nutrition in College so i do have a degree of knowledge in it. Whatever maybe wrong with certain things can probably help heal it, even if it's small. Lastly, i do have a joy that nothing else can bring me, my first child now 7wks.
It could throw off your methylation balance at the commonly offered high dosage. Read the negative reviews on Amazon on Tru Niagen/nicotinamide riboside, and try stopping the supplement for a few weeks or more.
My next Neurology apt is in a Year. I just went to Mayo and they said small neuropathy w/ autonomic issues. Which i assume he knows a lot.things considering he is head of neurology dept. Plus they did autonomic test, that came back normal. He says he sees no signs of PD. Then i went to my Movement specialist who said will see u back in a year. I know this is what they do hoping u get better. The thing is some things have gotten better. Pain in my neck was like a 7 a few mths ago. Now its barley noticeable or like a 2. If stressed it can get worse. Balance has improved a little, cause i used to bump into door frames more. It's the lower urinary area and libido that is most effected. I also say my memory is not as good, and some cognitive issues have presented. Like forgetting how to spell words i used to.
I walk into door frames too, it's loss of propioception, where your body is in relation to space.
Have you done the Romberg test? Look it up on YouTube, stay safe when attempting to do this yourself. Stand with your back to a corner without touching it and have a kitchen chair in front of you to grab onto if you start to fall.
After seeing all the coverage about the Covid-19 deaths, I am glad that I am still alive. I will be happier still two years from now if I am able to avoid contracting Covid-19 and remain alive and healthy : Parkinson's disease.and all😊😁
Except for Reynaud’s, I’ve had the same, or very similar symptoms, that you have, that, unfortunately, don’t get better. PD is an insidious disease to diagnose,and I had 7 years of symptoms, mainly mild, and subtle, before I was diagnosed, with PD. Exercise definitely helps, along with Sinemet. I had developed resting tremor, and cogwheel rigidity about 2 years before diagnosis. Several neurological specialists have examined me, and tell me it’s PD. So, it’s different for each person, and now, 15 years after all that started, I have a number of other symptoms, so it has advanced, somewhat. Perhaps, you are at the beginning stages of this, and it may not be at the point, where the Docs are certain as to what exactly the diagnosis should be. I was really upset, when the ED hit me, and dribbling. I’ve not been able to do much about that! The peripheral neuropathy, and cold hands and feet, has gradually got worse, over the last 10 years. I am of the persuasion that PD is not just one disease, but is a combo. of several similar ailments, and some strains are worse than others, and symptoms can be variable. Some people agree with that hypothesis, and others don’t. It might explain why PD presents itself, in many different ways, for each person. It reminds me of snowflakes. Each snowflake is different. It’s very frustrating, when there is not a for sure diagnosis, and when symptoms fluctuate too much. One thing is for sure, my PD was like a switch in my head, that went off, and it has never returned, and come back on. I don’t know if my sharing my experience will help you or not! I just know, that I felt compelled to reply to you, because I have had so much frustration with symptoms, such as labile blood pressure, temperature sensations of cold, when everybody around me feels the temperature is ok, and the ED. Good luck in your quest for answers. This forum has proven to be very helpful to me.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
What Happened?
Could I ask your opinion on my symptoms please?
I need to vent! Parkinson's has cost me my husband but it's been a long and hard journey to get anyone to listen to me!
Anyone with Parkinson Plus Syndrome (MSA)? You can message me if you prefer.
