[John Citron]

I have learned the hard way to do things in moderation because I can’t do the things like I used to. I was one that used to work a 60-hour job plus go to school at night and study piano too, then come the weekends I was off and bike riding 50 miles or more during the nice weather. This doesn’t mean I still don’t do things; I just don’t do a lot of them like crazy and pace myself a lot.

I’ve been on disability since 2012 which meant tightening the belt with no vacations and traveling like I used to. I found that was getting to be too much anyway with the stress of the trips making me feel worse than when I started. Being on disability is also a bit stigmatizing because people look at me like I’m lazy. I don’t always show outward symptoms and the tremors are not always present. For the majority of the normal ones, we only have the tremors.

As we go through the phases and stages of Parkinson’s we learn to compensate and have to do things differently. I now have to think about my feet to avoid falling, count out loud sometimes when I walk to keep from freezing, and fatigue easily. Speaking of fatigue, which is different from being worn out or tired, going food shopping is exhausting. Going to the doctor one day means the next day is toast physically. Naps are my friend now even though I never thought of them before.

More recently, we’ve renovated the downstairs bathroom and put in a handicap accessible tub with rails and a seat. This will help my 87-year-old dad right now, but that’s also future-proofing the house when I’m banned from climbing stairs because, I live a house designed by M C Escher, or it seems that way! 🙂

I also don’t drive as much. I am actually a bit concerned about myself on some days and I recently had a couple of near misses which scared me. This is something I need to talk to my neurologist about. Seriously!

I now leave the cooking to others. I have insisted on placing a metal pot with eggs and water in it in the microwave. I didn’t do this just once; I’ve now done it three times already!

I have a difficult time tying the garbage bags closed and end up using a twist tie. For some reason the coordination isn’t there to tie the ends properly.

I can no longer participate in jury duty. When the fatigue hits and the meds make me tired, I don’t think the judge would be too happy. I mentioned this to the clerk of courts at my last jury duty and I was dismissed immediately! She was very nice and agreed, that wouldn’t be a good thing. I then had to call my doctor for an exemption form that was faxed over.

So, yeah that rude awakening that happens albeit slowly over time is a rude awakening when we start thinking about it. I’ve adapted by not doing as much or some of the things I could do before.

[John Citron]

Gary,

I wish you lots of luck with this. My recommendation is to get to a teaching hospital or clinic if you can where the doctors are more open-minded. I transferred from a local neurology clinic, now out of business we wonder why, to the famous Lahey Clinic which is affiliated with Tufts University. My current neurologist is the chair or dean at the university the last I heard.

It’s because of this that I ended up over at the Lahey Clinic. The first neurologist I saw told me right out, I was “Too young for Parkinson’s Disease” at 43-44 years old! My symptoms in fact were very similar back then in particular the internal vibrating which I still experience. It’s like holding a motor tool then putting it down with the vibrations continuing. In my legs the feeling was like standing in a train passenger car over one of the motors then leaving. That residual feeling is still there, but there’s nothing there to cause it.

This first neurologist kept insisting it was focal dystonia and was trying to push me in that direction. After I pushed back and had him give me some Carbidopa-Levodopa after a friend insisted what I had wasn’t focal dystonia, and like Annie it was like night and day, his retort was “Oh you have a bit of dopamine uptake issue”, but I want to come to my Botox Clinic.

My old GP kept pushing the FND route and whispered in my ear that “I should see someone about it” after the neurologist made a mistake in his report which said everything was normal even though I was put on C-L and Mirapex which were working well, and I required an increase in the Mirapex to the next level up with the controlled-release of CR at night.

When I confronted my GP about it, his face turned ash-colored, then a bit greenish gray, to be followed by bright red when he sat down on his chair! It was then I made an appointment at the Lahey and saw my current neurologist/MDS for the first time in 2006.

I think doctors push the FND route because it’s easy and actually is a cheap way out. The run a few cursory tests which will show nothing, besides we’re too young and don’t have the have the obvious symptoms which are easy to spot, so it’s quick test or two, plus a blood test or two, and they’re done. Nothing found, then it’s FND and the patient is given an anxiety pill.

For the majority of patients, they’ll take what the doctor says and that’ll be the end of it. Then there are us who will balk, fight as we do some critical thinking about it. We’re the “troublesome” ones that don’t fit well with the rest of the cogs.

In the end, Gary don’t give up. The longer they delay treatments, the worse you will feel. When you start on the treatments, the feeling is like night and day as both Annie and I and many others will say over and over.

[John Citron]

My sleep varies from day to day, or as I should say night to night.

There are nights when I can’t get to sleep fast enough and will zonk out and wake up the next day happy, then there are nights when I can’t do it and end up staying up and reading or doing something at my computer like use my Trainz program because I hate watching TV, besides it’ll bother others in the house because the dog will start barking when he hears the voices. I swear, he can hear a leaf fart and barks at neighbors across the street if he hears them.

Some nights start off perfect. I’ll head right into a deep sleep, dream vividly and wake up after about an hour. The sleep feels like I had been there for hours, but it’s only an hour like a short nap. After that I get up because staying in bed attempting to sleep makes things worse.

Being one with a critical thinking and analytical mind, I did some troubleshooting as I tried to attribute this to various things that might be affecting my ever so wanting night’s sleep.

At first, I thought this had to do with me napping during the day which I manage to do right after my evening meal. This nap isn’t a “just check for light leaks moment”. This is an outright really MUST close my eyes otherwise I feel barfy type – The kind we get when we’re fatigued. I’ll then nap in my chair, ending up like a pretzel, but a bit more rested after an hour.

But that wasn’t it. I’ve napped and ended up sleeping deep anyway on some nights and others I toss and turn, well toss on one side because I can’t turn over well.

I thought about caffeine. Yes, I’ll drink coffee during the day and maybe a cup of tea after dinner occasionally but mostly in the winter. My coffee consumption is about 2-1/2 to 3-cups per day and nothing more. I don’t drink soda because it makes me urinate a lot and the sugar make me feel queasy.

But that wasn’t it. It didn’t matter if I cut back on the caffeine and kept it no later than noon with no tea at night.

I’ve deliberately been avoiding the news at night to ensure I don’t get my mind working on that as I go to sleep. With all the world’s events these days, that means nightmares and over-thinking all night as I attempt to solve the world’s problems. I’ve done this to myself in the past and the worries and angst over the events makes for a horrible night.

But avoiding the news didn’t help either.

In the end, it must be the Parkie brain at work. When I do get my good to awesome night’s worth, I enjoy every minute of it and deal with the other days when I can’t.

[John Citron]

As a kid I was exposed to Chlordane, Malathion, and other garden poisons. My dad used to cover everything with Chlordane to keep the carpenter ants from invading our house and also used it in the garden to keep the rose beetles at bay. The Malathion came out when the tent caterpillars invaded the shrubs and pine trees. We also used to spray this along the edge of the woods to keep the mosquitoes from invading in the summertime.

The exposure may have come from me helping. Unlike my younger brother who was too young to do this, I was out there in the garden helping out and I used to handle the spray nozzle for the liquid mixtures. The spray was controlled by pressing my finger on a hole in the nozzle and the poison would run down my hands. This was in addition to any spray back caused by a breeze or hitting the side of the house. I can still mentally smell the Chlordane and Malathion to this day.

[John Citron]

Mary-Beth you are spot on!

After I went through the five steps of denial and acceptance, I realized that there’s a lot more to the world than as we see it on a daily basis. As I said to someone one day the grass really is green, the sky has the most beautiful blue, and the flowers really are brightly colored. We don’t see it as the world whizzes by us like the world outside the window of the Acela train as it passes through the countryside.

Like you, I also really cherish the people I have closest to me. As we go through life ever so quickly, we don’t realize what and who we have until they’re gone. Keep them as close to your heart and appreciate their presence as much as you can always.

[John Citron]

Probably my story is a bit more complicated than it is for other people, but that’s usually my case. Nothing is simple when it comes to me!

I was officially diagnosed in 2014 but had symptoms years before and took C/L and Amantadine for a number of years before quite successfully. The medication worked well enough for me to be able to work until late 2012 before everything started falling apart on me.

I started in mid-2004 with painful spasms in my legs and feet along with awful fatigue and tremors. Being a classically trained pianist, I noticed coordination problems in my hands at times which I initially attributed to being exhausted from work. Heck, I was not only working a 60-plus hour week, but I was also taking night classes in information technology towards my bachelors in IT.

It was the tremors though that scared me because my grandfather had Parkinson Disease. I distinctly remember him shaking all over and shuffling about. He lived with this during the time when there was no treatment for the disease like we have today.

My primary care doctor tried Toprol to stop the tremors thinking it was benign essential tremor. This didn’t work and did nothing except make me very tired and out of it. He did find during some tests that the Lipitor I was taking had done some severe muscle damage and we stopped that, but once my CPK levels were back to normal the tremors and outright fatigue remained.

I eventually saw a local neurologist who diagnosed me immediately with focal dystonia because I played the piano for about one hour per day. He did some quick tests and handed me a brochure about dystonia all in about 12 minutes that we met. I saw him again and he had me go for some other tests which showed other neurological signs other than just dystonia, but he insisted that’s all it was and insisted I go to

his

Botox clinic for shots. I balked and we became enemies! Something inside said NO! to the Botox shots. He reluctantly gave me some muscle relaxants, but that didn’t help either much at all. I still had spasms, tremors, and very sore biceps among other things going on.

A fellow music friend of mine, a primary care doctor, noticed my gait and me holding my bicep muscles because of the pain in my shoulders and arms. He told me right out that this wasn’t dystonia, and I should ask for further tests and seek another opinion. I saw my neurologist again and asked him about this. Being enemies by now, he was on the defense and insisted it was dystonia, and I pushed harder to try something else. He reluctantly gave me Sinemet. It worked 100% off the bat! He didn’t have much of an answer and we went for Mirapex as well and that helped a very tiny bit too.

The Sinemet released my hands which were no longer clenched tightly. My feet uncurled and for the first time in what felt like a lifetime I felt normal again! The aches in my biceps went away as well.

After some mistakes in a report back to my primary care doctor, I was able to switch to my current neurologist at the famous Lahey Clinic.

Throughout this ordeal, I found out the hard way I had to be my own health advocate. I found out that if we don’t speak up when we don’t like something, things can go seriously wrong. As it turned out the first neurologist is no longer in practice!

My current neurologist is definitely more thorough and sent me for further tests to ensure this is what she thought it was and not something else, and she said yes there are some components of dystonia, and it was good I didn’t go for the shots. (The ole gut was right again). I was told that I have other things going on in addition to the Parkinson Disease which kept her from making a firm diagnosis earlier.

I also found out too that we can be our own worst enemies. The internet does not help either, I’m sorry to say this online. The information has gotten much better since the late 2000s, but there’s a lot of scary information out there too that’s incorrect. That scary information can do scary things in our minds.

Being my own worst enemy meant I stopped playing the piano. After about year of being on strike, I found I was the only one in a funk. Nobody else cared or bothered to ask me how I felt. It was then I focused back on my music in earnest.

In 2009 I enrolled at University of Massachusetts at Lowell as a music major after being laid-off from my job during the great recession. I was able to put in the best year of my life as a music major and only wish I could have done this when I was 18 instead of 48. I maintained a 3.89 GPA during that full academic year and so wanted to remain in school for music.

I went back to work after running out of money and ultimately ended retiring on disability in September 2012 due to the increasing symptoms including balance and cognitive issues, stress and inability to keep up with the job.

Today, I try really hard to maintain a stress-free environment and focus on the things I like such as music. I still play the piano nearly daily and belong to a group of pianists and organists who talk music on a near daily basis.

I discovered too that being diagnosed with Parkinson Disease doesn’t mean we have to stop living. Do what you can while you can and enjoy every minute of it.

[John Citron]

After my diagnosis, I became more aware of the world around me. I follow storms and severe weather, even went storm chasing when I could do it physically as well as financially and enjoy the outdoors overall more the beauty that mother nature has given us.

I also cherish my family closer than I ever did. When we’re young, we go passing through life as if we’re driving on the highway. Today, I take the backroads and enjoy what’s around me.

Marlene also hit the nail on the head. As someone who also takes care of pets and an aging parent, dealing with stink is part of the package. Before Mr. Parkinson joined my life, I couldn’t even walk into the room without gagging when it came time to clean up. Now, I just do it without the smell part.

Not being able to multitask however is frustrating. It was due to this that I am no longer working. I couldn’t keep up with the pace and I was becoming more and more disorganized which for someone who works in IT is a bad thing.

The other part is people think I’m “normal” and I can still do the same things the same way and get snappy at me for not doing instantly or not completing a task before moving on to another. They don’t understand! Our brains aren’t wired like they used to be.

[John Citron]

I PLMD or periodic limb movement disorder and have punched myself in the eye and blackened my hand on the bed frame as I flailed about in my sleep. It was difficult explaining that to my coworkers when I was working!

Generally, my dreams are very vivid to a point where I can hear, feel, smell, and even taste things. These are the ones I enjoy especially as I relive my days of traveling and going places. It’s the scary ones that have knocked me on the floor or have given me visitors I don’t wish to have that I want to forget!

[John Citron]

<Typo>

I have PLMD or periodic …

[John Citron]

Yup same here. One minute I have my hoody on and another minute I’m peeling it off. During the summer I sweat so much that my head becomes slimy and gross feeling, and my glasses steam up. This never occurred before I had PD.

I went for an autonomic nerve test for my low BP, and it was discovered that my response to temperature changes is very slow which explains why we freeze or fry.

I too have Renaud’s. My grandfather who had Parkinson Disease also had it and so did my mom. Living in a cold climate means my hands turn yellow and my feet freeze. The response is the same in the supermarket where I also freeze to death even in the summertime. When I go to the store now, I put on a sweatshirt or sweater even during the summer months. People look at me like I have three heads when I walk in the store when it’s 98 F (37 C), but I don’t care.

[John Citron]

John,

These things are mean!

I take C/L 50/100 at night and that helps me get through the night most of the time, but still get hit with them around 4:00 am. What is it with that hour?

What’s interesting is this was one of my earliest symptoms of PD which I attributed to not drinking enough water while bicycle riding when they first started. They got so bad I was getting them all the time including when driving home from work. There were a few times I had to pull over and let the feet calm down.  Once I started on the Sinemet 25/100, these things all but disappeared during the day and only visit at that hour.

 

 

[John Citron]

This is one of the meanest of the non-motor symptoms of PD!

My record is about 14 days as well and by then I’m a bit unnerved as I expect myself to explode!

I find though eating fruit such as apples, tangerines, pears, and grapes help the plumbing do what it’s supposed to do. To vary my diet a bit, I’ll throw in some trail-mix as well. I don’t like a lot of salt or sugar, so I get the plain kind with mixed nuts, raisins, dried cranberries, and other dried fruit. The results are fairly consistent for me, and it tastes good as well.

[John Citron]

Haverhill, Massachusetts which is about 35 miles north of Boston and 4 miles south of the New Hampshire border.

I was born here in 1961 and we lived across the bridge in Bradford, also part of Haverhill. I then lived in Merrimac and Andover then moved back to Haverhill where I bought a house with my parents in 1999.

I retired in 2012 and was fully diagnosed in 2014 but was showing signs and symptoms for years prior.

[John Citron]

Similarly, this is the same for me as well. I mentioned this to my doctor at my last visit. For a big part of my adult life, I lived and worked under stress. It wasn’t until 2018 when the very famous you know what came to an end and my symptoms did too.

During this time, I was working fulltime, attending evening classes online as I was finishing up my BS IT degree and trying to do the other stuff at home. If the work stress wasn’t bad enough, coming home to the rest only added to it because there was such high tension from what was going on there as well. I had a failing elder parent along with abusive siblings. One who threatened to push me down the stairs. Work ultimately came to a sudden halt in September 2012 and there was a sense of loss, but relief too but that didn’t last for long.

In my technical support occupation, I was responsible for 700 employees, 680 in-house and 20 in the field plus training new teammates, inventory, security clearances, and other tasks. After nearly falling at work, I was put on probation and told to get my act together because I wasn’t keeping up with the team. It didn’t matter that I was closing 350 tickets a month. My boss was going to terminate me because I had 50 tickets open in my queue. It didn’t matter that I received 3 awards for excellent performance and support. He was young at 22 and didn’t have a clue. It was then that I sought out disability because staying on top of things mentally and physically was becoming a challenge more than I could bare.

During this time, I would go home and could barely get out of my car. I couldn’t stand up. I was tremulous, lacked coordination, had vertigo, and lots of rigidity and stiffness. My medication too had been increased more and more to a point where I was taking a whopping 18 Sinemet daily plus Amantadine, and something else. These left me lightheaded, and nauseas, and didn’t do much at all. My doctor and I did a reevaluation and we cut back a lot with the introduction of Azilect and later Seligiline due to the cost of the Azilect. This worked a lot at first, but then I was back into more symptoms again.

Finally, it was in 2018 after my mum passed away, did I feel some relief. It was as if I had reached the end of a tumultuous journey and arrived at a quiet cabin. Today, I’m on a minimal amount of medication. I need a bit more now than I did a couple of years ago, but the stress isn’t there.

When I am stressed, I tremor right off. I look like my grandfather who had Parkinson Disease with the tremors. I also become stiff, and nothing feels right, and I become outright fatigued.

Like Garrett, I too can only deal with one thing at a time. If I go food shopping, that’ll be it for the day. The same with a doctor’s appointment at the clinic. After the stressful drive, arriving, parking, and everything else, I’m exhausted and feel that way for a day or so afterwards. Sure, I’m “old” having turned 60 last May, but that’s no excuse. I’m kidding here and it’s a bit of a joke I have with my cousin whose 6 months younger. I’m far from old, yet I am.

In the past, relieving stress was done by bike riding. I had a route that had a nice ice cream stand located next to the railroad where I would sit and watch the trains pass by. I always managed to time it right to get a good show. Other times, I would walk the trails in the nearby reservations. The spring and fall were my favorite times with the odor of spicy leaves and earth especially in the autumn. Where I live today, this isn’t so much of an option due to the lousy roads and hill I live on, but I’ll take a ride with my brother when he goes metal detecting. The walk is great exercise and the only thing I have to watch out for is poison ivy. When it’s winter or bad weather, I’ll focus on my other hobbies and escape into my virtual railroad world as I work on my routes and sessions. We need that escape from the rotten things to recover and rebuild.

 

[John Citron]

I have three possible vectors where I got PD from.

My grandfather on my mum’s side had it. He unfortunately passed away with no treatment for it. I remember him tremoring away and staring off into space. The family blamed his tremors on drinking, but he didn’t drink a lot to cause tremors as I’ve seen in other people. He was also called lazy, dumb, and slow, and this was the Parkinson Disease; he was none of that at all.

I worked in the high-tech industry initially in circuit board assembly and later as a technician where I was exposed to solvents, flux, solder, and chemicals from the components themselves.

I was also on Lipitor from 1995 to 2004.

I always questioned statins and never felt well when I took it, but being a good patient, I listened to my doctor. I have familial high cholesterol and it takes a lot to lower the values to the “normal” range. The doctor doubled my dosage and after that I really didn’t feel well. During a routine blood test, he discovered I had very high CPK levels and during this time I also had really bad cramps in my legs. I was sent for an EMG/NCT and that showed some muscle weakness and I also had Rhabdomyolysis from it. I stopped the medication and never felt right since.

By mid-2004, the spasms and cramps got worse. I would get them when driving and ended up pulling off the road. Little did I know that was the PD. I still get those so bad in the wee hours that I have broken toenails. My hands tighten up so bad I end up with bruises in my palms sometimes at the same time as the feet doing their thing.

I could barely get out of my car, and my left arm wasn’t swinging. My manager noticed that and the fact I wasn’t smiling. He noticed too that I was clenching my left hand tightly and asked who I was about to put down, kiddingly of course! He did insist I smile. Knowing now what was going on then, now makes sense.

I am a classically trained pianist and played and still play almost daily. I noticed too that my hands wouldn’t always get their act together and my coordination was off. One day, I developed tremors on my left side, and it was then I contacted my doctor. I still get this and it’s very upsetting and frustrating.

He sent me to a neurologist who said I had Focal Dystonia after we met for about 19 minutes. He came to this conclusion because I play the piano 1 hour per day if I was lucky. Yeah, this did it.

He handed me a bunch of brochures and said to see him in a few weeks for further testing. I then saw his associate who noticed other pyramidal and extra-pyramidal anomalies. I then met with this doctor again, and he said exactly what he said before along with set up an appointment with my Botox clinic. It was then I put the brakes on and questioned him. Let’s say I didn’t have a good repour with him afterwards.

Being a musician, I joined a Musician’s with Dystonia support forum and talked about my symptoms. The doctor on the forum told me to seek a second opinion because what I had didn’t sound like FD! A friend of mine, a doctor, also said the same thing. There’s a picture of us standing together and there I am holding my sore left biceps, again.

After that, I insisted that neurologist give me some Sinemet, and it worked 100%! I felt normal after the first dose with not even a touch of nausea. The medication increased plus Mirapex.

When I asked him about PD, he said I wasn’t old enough to have it. I then switched to another neurologist in November 2016 after he messed up a report to my primary care doctor, and I’ve been with her ever since.

 

 

[John Citron]

Hi Ally,

I sent you an email.

John

[John Citron]

Wow Elizabeth, your neurologist was kind wasn’t he! *Snark here*

Mercury and other heavy metals cause all kinds of nerve damage. The mad hatter was a real thing in the 19th century. The felt was treated with mercury to make the threads tighter and more pliable.

Why Was Mercury Used in Hat Production? – Hat Realm

Arsenic ends up in rice from chicken poop and feathers used as fertilizer. Arsenic is given to chickens to make them more palatable looking because it turns the flesh pinkish instead of letting it remain yellow. They go off to market and their manure and feathers is used to fertilize the rice. Arsenic is also used as a pesticide and for rodent control.

The other thing I read was the arsenic ends up in the rice paddies because the land, especially in the Southern stations in the US, that was once used to grow tobacco and cotton is now used to grow rice. The fields were treated with arsenic-based pesticides to wipe out the bole-weevils that feast on the plants.

How Much Arsenic In Rice Came From Chickens? | NutritionFacts.org

[John Citron]

The use of tin-lead solder is still prevalent in the electronics industry, although I haven’t touched a soldering iron since 1992 when I left that aspect of the industry and entered into computer operations. By then the US tech jobs had disappeared as they moved offshore.

I will ask my neurologist and my primary care doctor about my iron levels if the D and iron go hand in hand.

I agree there are too many dots to connect here, but maybe someday someone with enough money, time, and energy can do it.

[John Citron]

I tried that and it didn’t work for me, but the C/L did. It was worth the try though.

[John Citron]

Thank you for this detailed information as well, Robert. I see my neurologist in a couple of weeks, and I will bring this up again. She’s very open-minded about suggestions and we work together and not as adversaries that have two different paths.

Recently, during another routine blood test, it was found my Vit D was low and I’ve started supplements for that as well. I had a shot initially and now continue with pills for the. Vit B12 was initially weekly then monthly 5000 mcg injections and now due to Covid-19, I take 5000 mcg supplements. I do go for periodic blood tests for this because I’ve had absorption issues in the past and if the pills aren’t working well, I’ll need the shots. The B12 shots made a big difference in my symptoms more than anything I’ve taken.

I mentioned the high-tech industry work because I’ve noticed a correlation between PD and that. My neighbor, who sadly just passed away, also worked in the same industry as a hardware technician and also developed PD. It makes me wonder if the chemicals used to clean the circuits as well as the materials used to make the components has something to do with this. Is this a one-off? I’m not so sure. There are others in the same industry that also developed PD including the former head of Intel.

When all is said and done, we may never know because there are so many causes ranging from chemical exposure, viral infections, genetic predisposition, and anything else in between, but it’s worth working and researching with hopes to find out.

It’s interesting research and the correlations help us determine what the specific cause maybe in some areas, but there seems to be an underlying predisposition for it, otherwise, the numbers would be higher. Why is it only 500 people in an area end up with a specific cancer or PD while the remaining 200K-plus residents do not? Is it luck of the draw, or is it something else that makes that happen?

In my case, my grandfather had it. He also had the 1918 influenza which left him deaf. Was it the influenza that caused the PD, but why did I end up with it too? It’s questions like that go through my head all the time. I think this is in part my inquisitive mind, being one that loves science and engineering. It’s because of this, I put on my critical thinking cap and do a long and short look at everything that’s presented to me, and it was because of this the first, neurologist and I didn’t get along. He thought he could pull “I’m a smart doctor and you’re a dumb patient” on me and that didn’t go as planned. In the end, he’s no longer in practice which is a good thing for others but sadly he ruined a lot of people’s lives along the way.

[John Citron]

You went through the wringers as they say Patricia.

My first neurologist wanted to visit his Botox clinic to make money off of my insurance. Being one to question, meaning I put on my critical thinking cap and asked questions that he didn’t want to answer, we became adversaries.

Eventually, after a report back to my primary care doctor that completely contradicted what was discussed in his office, I finally got a second opinion. It was then that this young neurologist, fresh out of John Hopkin’s and did her residency at Mass. General, with an open mind who put me through a bunch more tests.

In addition to the EMG/NCT, I had tests for poisons, low vitamins, which proved my Vit B12 was dangerously low. Dangerously low as in being at 27 instead of in the 900-range where it should be. The first doctor never bothered and had made up his mind in 30 seconds, I think.

After this incident, I discovered you need to become your own advocate and fight back when things don’t “smell right”, you need to speak out and speak up loudly and keep pushing when things aren’t right.

I think part of the problem over here is doctors don’t listen to the patients and don’t look at the whole picture and instead focus on a tiny point. This is unlike the treatments you see in Europe where they focus on the body instead of one small thing.

Over here because of that micro-focusing, they instead have preconceived notions and theories rather than looking at all the facts and listening carefully. I ran into this with another doctor. I had pains in my neck along with numbness in my face and awful headaches. I was told it was a migraine and then told to deal with it.

After passing out one day, I lost coordination with my hands, couldn’t tie my shoes, or do much of anything for a month. I was sent for more tests… I had a TIA (ministroke)! During the ultrasound, a tumor was also discovered on my thyroid which I had that removed.

That was a 4.5 cm cyst putting pressure on my neck. When I had that removed, the pain in my neck and shoulder went away. I was experiencing two things and the doctor I had didn’t listen to me at all. My hands recovered, but the numbness on my face never went away.

[John Citron]

John,

My uncle was there in the 1950s to early 1960s and lived in the barracks near the drycleaners. He ended up with multiple cancers from it. Sadly, he passed away in 2011.

[John Citron]

I was when I went for a second opinion. This neurologist, my current one, tested me for heavy metals, and other toxic exposures. My results came back normal or within the “normal range” on all the tests.

[John Citron]

Phil,

My uncle was stationed there in the 50’s and 60s. He ended up with colon, prostate, and lung cancer from the dry-cleaning fluid dumped into the water. He lived in the housing right behind the cleaners.

I’m surprised he didn’t end up with other things besides that.