Stories

Leo Revised

Journey to Diagnosis

Diagnosed at 32

My story begins in July 2008. I started to exhibit some odd symptoms, such as a tremor in my left hand, involuntary movements in my arms and legs, and fatigue. At first, I attributed these odd symptoms to being stressed and tired because my wife and I were expecting the arrival of our first and only daughter. As my symptoms continued, I decided to ask my primary care physician what my symptoms meant and if I should see a neurologist. He laughed and said, “as long as your involuntary movements are not bad enough to cause things to fly out of your hand, such as a cup of coffee, you’re fine and should not worry.” I pressed him to better explain my symptoms and to refer me to a neurologist, causing the neurologist to become extremely angry and to inform me I would be referred, but that because of my age, the neurologist would do nothing. My primary care physician quickly became my “ex-primary care physician” and I went to a neurologist.

The neurologist was not much better than my previous primary doctor, dismissing my symptoms and informing me that I was too young to have anything seriously wrong with me and that I no longer needed to be seen. At that point, I was very upset, not to mention scared and I did not know which doctor I should see next. My wife got along very well with her primary doctor, so I decided to go and give it a try. By this point, I was also experiencing pain in my left shoulder, forearm, and hand. I was also experiencing numbness and tingling in my hands. I did make an appointment and went to see this doctor, only to be told that I "may" have a pinched nerve, but there was no doubt I had anything seriously wrong with me.

After also being dismissed by my wife's doctor, I decided to go and see another primary doctor I knew of. This doctor seemed to want to help me. This doctor ran a ton of blood work and ordered scans, all of which revealed nothing wrong with me (I am sure most of us have heard this one before). This doctor diagnosed my symptoms as "Fibromyalgia" and promptly prescribed me pain medication, which did not help at all. My pain was continuing to get worse and reached a point where I was unable to perform my job as a special education teacher and was forced to go on disability leave, which I am still on to this day.

I was greatly disturbed by the fact that I had gone from an individual, who did not get sick with anything and definitely did not call in sick to work or ever imagine going on disability, to an individual who had to be on disability because I was in so much pain and was so fatigued that I literally could not get out of bed some mornings. My family and I had to fight to win short-term disability benefits. In my state, teachers are not legally eligible to receive state and/or federal disability benefits. Since I was not eligible to receive state and/or federal disability benefits, I purchased a disability insurance policy, when I first began teaching, from a private company that specifically sold policies to teachers, consisting of short-and long-term disability coverage. I was initially denied short-term disability benefits, but after my family and I retained an attorney the disability company decided to award us the benefits we were entitled to (funny how this worked out). It was a lot of work, not to mention stress, but we had to have the benefits to survive as a family. Once I had been receiving short-term benefits for two years, the disability company reevaluated me and found that I was eligible to receive long-term benefits because my disability was expected to be permanent. I continue to receive long-term benefits to this day, but I also continue to work in the field of education a few hours a week, in a local graduate school program, because I refuse to allow YOPD to take away the joy I receive from educating others and assisting them with achieving their dreams. Ironically, the only reason I decided to purchase disability benefits when I first began teaching was because my family pressured me to do so. Since I was never sick, I thought I did not need any type of disability benefits and could not even imagine ever having to use them to support my family. Life can be cruelly ironic.

By December 2010, my symptoms continued to worsen and I started to develop new symptoms, such as rigidity in my legs, feet, and back; severe coldness in my feet; excessive sweating; confusion; memory problems; difficulty walking; and difficulty keeping my balance steady. Due to my new symptoms, I had to begin to utilize a cane, in order to walk safely. By the end of January 2011, I knew something serious was going on with me and I needed to find out what it was and stop it as soon as I could. I decided to do some research and located a wonderful primary doctor, who listened and took my symptoms very seriously. This was the first doctor I had seen that really listened to me and took my symptoms seriously. The doctor referred me to a new neurologist and asked that I contact their office immediately, when I was finally diagnosed because this doctor truly cared about me and wanted to make sure I found an answer. This doctor also said the cause of my suffering needed to be identified, so if this doctor had another patient, who exhibited my same symptoms, the symptoms would be easy to recognize and treat appropriately.

I went to the new neurologist and unfortunately, I was dismissed once again and was told I was too young to be ill and that “I needed to county my blessings because I was young and had a good brain.” I quickly realized that this neurologist was not going to help me and that I needed to see someone else. I went on to see another neurologist at a major American university, who told me I “definitely had neurological problems, but that there was NO diagnosis that fit my symptoms.” I then saw another major neurologist, in one of America’s largest cities, only to be dismissed once again. This neurologist not only dismissed my symptoms, but made excuses to explain each of them that were not based on the facts of my illness and the progression of my symptoms. When I asked this neurologist if I could possibly have Parkinson’s disease, the response I received was, “you could not possibly have Parkinson’s Disease” (as she laughed at me) and “you just need to adopt a good stretching program,” and everything would be ok.

After seeing this last neurologist, my family and I were very upset by the lack of answers; my symptoms were getting worse; and I was reaching a point, where I and many members of my family believed I was going to die before I was appropriately diagnosed. In October 2011, I was seeing my pain management doctor for help with the pain I was experiencing throughout my body. I was also seeing this doctor for my fatigue. I asked this doctor to refer me to a good neurologist that could actually make a diagnosis that would explain my symptoms. This doctor informed me there was a neurologist that was very thorough and would do everything possible to develop a diagnosis that fit my symptoms. This doctor referred me to the neurologist and on October 27, 2011, my wife and I went to my first appointment.

We were instantly impressed with how this new neurologist paid close attention to, not only the information my pain management doctor provided on the referral, but what my wife and I had to say about my symptoms, how they had progressed, and how they had impacted our lives. The neurologist did a thorough examination, listened to all we had to say about the onset and progression of my symptoms, and watched me walk (without my cane) up and down the hallway of the office. Once the neurologist completely finished with the evaluation, my wife and I received the findings. Before the neurologist began to speak, we decided to be completely honest and said we had reached a point where it did not matter what I was diagnosed with because we knew my condition was very serious and we had prepared ourselves for the very worst. On November 11, 2011, the neurologist took a breath, looked me right in the eyes and said the words that would change my life forever, “You have Parkinson’s disease and because you’re so young, you technically have Young Onset Parkinson’s disease (YOPD). I would like you to try a medication and if it helps your symptoms, we can confirm your diagnosis and we will know for sure.” This was the first time I heard the words, “Young Onset Parkinson’s disease.” My wife and I were very happy to know what had been causing me to feel so horrible over the course of the last three years. Do not get me wrong, having YOPD is not something that either my wife or I wanted me to have, but we were excited to finally know my diagnosis because we finally knew what was wrong and could make a plan to deal with it. The neurologist also said, “Being able to give you an answer and see how good it makes you feel, has made my entire weekend, already.” I replied by informing him that finally knowing my diagnosis, made my lifetime!

I have learned a great deal of things from my journey to receiving the diagnosis of YOPD. I have learned that when our medical community does not give you answers, you have to be willing to search for answers on their own. I have also learned that when doctors dismiss your serious and life-altering symptoms, you must continue to forge ahead until you locate a doctor that takes you seriously and wants to help. In addition, I have learned that when you know your body and know when something is seriously wrong, do not accept any doctor telling you that your symptoms are “all in your head,” or “you just have a low pain tolerance,” or “you just need to adopt a good stretching program,” which are ALL excuses doctors gave me, when they could not find an appropriate diagnosis. Furthermore, I have learned what acceptance truly means and how to utilize it to go on with my life, even when my family and I have been devastated by a diagnosis, such as YOPD. Lastly, I learned to be patient with myself and to take life as it comes, living each day, one after the other.

24 Comments

Leo's story...just what I needed. I am just now 36 but have been having symptoms for 10 years now. Initially MS was suspected but was ruled out with EMG and MRI.

In the past 10 years I have been to my primaries many times and got all the referrals to the specialist. While my primary(s) have been nice and listened, I believed...that they believed me, they could not figure out what was wrong with me. The specialist, pshhh! please. They have been rude, insulting, and short with me. They tell me less than what I can find on the internet. They elude to their belief that it's my weight or the oh-so-typical "It's in your head"...as in depression. I always assert that I am NOT depressed and that's making me sick, but that I am sick, something is seriously wrong...and yes, sometimes that makes me depressed but that I don't live in a depressive state. I have a husband and a child and am pretty pleased with my life...except for the being sick for 10 years and not having any answers.

It all started with fatigue. I thought, "I'm a new mom, I'm tired". The fatigue got worse over the next 2 years. I had a toddler and could only do the things that I had to. While talking to my older sister who already had 2 children, I was telling her about my "tiredness". I was telling her how I couldn't get off the couch except to do what I had to for my daughter, that I was always tired but not like sleepy-tired...tired like exhausted as if I had been working outside in the 90 degree heat for 8 hours tired. I told her how I was yelling at myself in my head to get up and do something but I just couldn't make myself. As I told her this and said, "I guess it's just part of being a new mom", she said, "Uh no, that's NOT normal". I discussed it with my other older sister who also had children as well. She said the same thing and they urged me to see the doctor.

I didin't go right away. I kept forgetting to call. The second sister who I sopke with, we have a history of not getting along very well though as adults it was getting a bit better. Well she would get mad at me and ask me how- if I was in such pain and so tired- how could I keep forgetting. This brought me to tears because I couldn't really explain it.
By this time I had gotten worse. I was having severe pain. Pain that would have me crying first thing when I woke in the morning. It felt as if someone had beat me in the back with a baseball bat. I was stiff and couldn't hardly walk for the first couple hours, thus making me walk hunched and hobbled. It's like me hips, legs, and back were locked up. My husband nick-named me "The Hobblet" after the hobbit from The Lord of the Rings movie. This was our humor to help deal with what was happening.
So after 2 years of symptoms coming on and rapidly increasing I did finally make my doctors appointment. She became my primary and referred me anywhere and everywhere. The first was actually the neurologist. As I said, testing came back normal...fine. I saw orthopedic (back) doctor and was told I had minimal scoliosis and dextro and retro scoliosis' (?) anyway...10 years later they say my back is fine, no scoliosis'.

In the past 10 years I have gotten better and worse. I have been on pain pills since early on. That did help some. I use to see the chiropractor every week for 2 years-where they first loosened up my tight muscles with electricity. That also helped. But altogether...I'm still chronically ill with no answer. I have many symptoms, some come and go. The biggest and longest standing complaints/symptoms are:
- Pain
- Stiffness (that I, from the very beginning, described to the doctors as being like I had rigormortis)
- Fatigue/exhaustion

I have Trigeminal Neuralgia (sharp, electric like pain) on both sides of my tongue. I have GERD (gastro-esophageal reflux disorder/acid reflux with erosions) for 8 years now. I have EDS III (Ehlers Danlos Syndrome type 3) which is a connective tissue disorder that cause hypermobility. These are the diagnosis I have been able to get.

I have many odd symptoms such as my pinky toe flexes out to the side and then twitches and slowly relaxes back, only when I'm sitting in my recliner. This started with my left foot in the past year...but now my right foot does it too.

I have fasciculations...or as I called them before knowing what they were...butterflies under the skin. muscles twitching very fast under the skin. I get these pretty much anywhwere. Mostly in my legs, mostly when sitting or resting. It's a daily thing. Calves, feet, top legs, back of thighs, ribs, upper & lower abs, around my eye, arms, buttocks. It happens off and on throughout the day and I'm use to them now.

I get the myoclonus (think that's what it's called). The typical "roller-skating" fall, as I call it. the sudden leg jerk like your roller skating and your leg flies out from under you. Everybody gets this, at least I have since I was a kid. What freaked me out was when, lying down to take a nap, I got a huge jerk like that in my torso. It was so strong that it made my arm jerk too. At least that's how it felt but whatever happened it was like a sudden, split-second huge, muscle jerk that moved my torso and swung my arm up. It's happened a few more times now and it's when I'm resting and is my torso plus either my arm or leg with it. Honestly, it's a bit scarey but without doctor's help...you have no choice but to just take it as it comes.

I am and always have been physically slow. Even slower now. I took to getting ready 4 hours ahead of time only to end up running late anyway. You can imagine how frustrating this was for my husband when going to church, as he was worship leader and needed to be there on time. The outcome to this? my husband and daughter leaving without me. I had to go in my car by myself. It was embarassing to walk in late, after service started alone. My husband had to try to explain to people that I was sick and it was hard for me...yet they saw me with my pain meds, coffee, and make-up and hair done, not knowing the huge effort it took and the price I'd pay later for my effort. No one sees the real me at home and down for days after doing very little. It sucks, right? Always hearing the "Ahh, you're young!" and the "You look fine".

Whatever I have, I have had for over 10 years now, and it is a very elusive, deceptive illness. Sick and tired of being sick and tired doesn't even cover it.

Leo thank you for your story. It is encouraging to me. I will not give up. I have an appotinment with the neuro on March 26th and am going to ask about YOPD and about finding a movement disorder doctor. This is something that has never even been mentioned to me and I, like most other people, thought PD was an old person shakey-hand-disease (with knowledge of the seriousness of it) but did not know the other symtpoms and that you could have it at a young age. So thank you to all who are out there helping and informing others. Your insight, wisdom, knowledge, and compassion are needed and appreciated.

Thank you, have a great day. Massa

Massa, Mar 21, 2012

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Hi Massa,
Your story is very similar to mine. I encourage you to not give up. I would find a good movement disorder specialist in your area that has an advanced knowledge of Parkinson's disease. Many neurologists do not have an advanced knowledge of Parkinson's disease and many less know anything about Young Onset Parkinson's disease. In my state, we have a special place called "The Parkinson's Institute, where they see nothing but Parkinson's patients, as well as, other closely-related movement disorders. If you keep looking, you will find a doctor that cares and will be willing to help you. You just need to get infront of someone who cares and is willing to do whatever it takes to get you the diagnosis you need. If there is anything I can do to help you in your search for an appropriate diagnosis, please do not hesitate to ask. I wish you the best of luck and I hope you find the answers you need very soon. Leo

Leo, Mar 26, 2012

It really sounds like you have an auto immune disease, the pain in the morning is very common in auto immune diseases. I have the pain every single minute of everyday but I do not take pain medication or anything, my ANA came back borderline positive but everything else negative which confuses my dr. I have lots of random symptoms that they always chalk up to anxiety and other random things. I've had the pain since I was 17 and all the other stuff since I was 26 (I am now 31) some has gotten better, some worse.

Danielle, Aug 7, 2014

If your headaches are exetmre migraine severity but unilateral (on one side) then they likely are cluster headaches. These are generally characterized with the earmark symptoms of a drilling or throbbing pressure behind one eye or ear, tearing eye, sensitivity to light/sound etc, blurred vision, nausea and/or sweating from exetmre pain, a drooping eyelid on the affeted side, and even a bloodshot eye.(I personally always get a bloodshot rearing eye on the affected side).Firstly, You should rule out all other possibilities with an MRI scan. If that comes back okay, you can discuss options with your neuro. For management long-term. here are some suggestions that have worked for me. Make sure your posture isn't hunched over and your neck isn't strained, that's a big one that's often overlooked and understated. Also make sure you aren't grinding your teeth, or that your jaw has too much tension. This may sound cliche, but I found my cluster headaches were due to TMJ, which was caused by a spinal scoliosis, but my own hypertension and stress while sitting caused the scoliosis over time, and also neck and jaw tension, which subsequently triggers cluster headaches.For ongoing symptoms, you need to find what works best for you.. Usually powerful pain medication is the last resort option for people for obvious reasons as they want to avoid addiction. Many chronic migraine sufferers find relief with oxygen therapy, eg:small tanks or cannisters with oxygen masks. I've seen forums where many extol the virtues of oxygen therapy use. I personally use Excedrin Migraine, guided meditation, or (believe it or not) a bite of a Habanero chili pepper. The heat from the Habanero bite stimulates an endorphin rush which often aborts my cluster headache. The tradeoff is a really hot mouth for about two minutes until it naturally wears off. The capsaicin level needs to be significant though (a few drops of specialty exetmre hotsauces work as well *eg: Blair's or Dave's) I've also found that controlled deep breathing, relaxing, and neck and shoulder massage can work just as effectively. The idea is that once people have their headaches the inclination is to stress further which often exacerbates the headache and prolongs it. Sometimes for me, just finding a peaceful place to sit alone, letting go , finding a Zen place, relaxing my breathing, and visualizing my blood vessels and nerves going from a dilated state to smooth and normal, while massaging the back of my neck is all I need. The imagery can be icy waves washing over a hot coal until it turns blue and dissipates. It just depends. The key is too find the ability to relax though, after years of suffering cluster headaches I've learned that stressing the state you're in makes it worse, while letting go and finding peace can normalize blood vessel tone. The key is to be able to do it In the throws of a cluster headache and all of its crippling pain.If you cannot manage that method, you should try alternative aborting methods such as huffing pure oxygen, a bite of a Habanero, or Excedrin Migraine tablets, Cluster headaches are said to be in the same family as migraines in that they originate from the same place but manifest themselves slightly differently. Whether it's oxygen therapy, Excedrin Migraine, Habanero Chili Peppers, Guided Meditation, or all of the above, I'm fairly certain one or all of the things I've mentioned would work for your cluster headache..Good Luck.

Aldrian, Apr 27, 2012

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Hi Just want to add to the Cluster migraines treatment. I was having cluster migraines from once a month 5 years ago to it's becoming every two weeks (Each migraine lasting 3- 4 days ). I tried many different medications, saw a few doctors, in the end, i decided to play around with my diet.. I eliminated wheat from my diet, I have not had a migraine since. It has now been 7 months. with the exemption of my experimentation - I decided to eat a slice of pizza one day from a shop that claims to cook it fresh and no added preservatives - within the hour I had another migraine that lasted three days and was so incredibly painful.... Sometimes looking at food and potential developed allergies is helpful.

Julia, Aug 7, 2014

You're post was also a huge help to me. I've been having health issues for about 10 months. My primary care doctor has been good, but can't figure out what is wrong with me. Went to a neurologist and after so many tests coming back normal he basically dismissed me as being depressed. When I asked him about Parkinson's he told me there was no way that I could have it. But he wouldn't even let me explain to him why I thought I might. So my primary doctor sent me to a different neurologist, who was much kinder and more readily listened. Did not dismiss my symptoms, but when I mentioned my left hand shaking he said if I was a 60 year old male, he might consider parkinson's, but I'm a 40 year old female. He said if the shaking got worse he'd see me back, and he did refer me to a neuromuscular doctor at a bigger university hospital. My symptoms include pain in my neck and shoulder, left side, that feels like a tight muscle and gives me headaches on the left side of my head primarily. Feeling like I'm shaking internally. Left arm shaking, but not all the time and not that many times. Worse if I am nervous. Extreme fatigue, but not sleepiness. Tire very very easily. Very slow moving. Everything takes me longer. Lately cramping in my left foot that makes me curl my toes while I walk. Plus my husband is always saying I don't smile anymore or always seem angry. And asks me to speak up a lot. Seems to me that YOPD is the only thing that seems to explain all my symptoms. But I can't really do anything unless I get a doctor to even listen to me. Hoping this neuro at the larger hospital is willing to work with me. It has only been 10 months, which I know is not that long compared to others...but I simply can't function. Though my symptoms can come and go (never go away completely, but I have light symptom days and bad symptom days). Is this typical with YOPD?

Lisa, Dec 13, 2012

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Hi Lisa,
Thank you for sharing your thoughts. I am sorry I have not gotten back to you earlier. I have not checked comments on my story in a long time. I cannot reason say that your situation is typical because I can only speak from my experience. My advice is to leave no stone unturned. To got to every doctor you can get in front of. Also, go to many of the great resources we have available in the YOPD community, such as this site or the Michael J. Fox foundation. There are also many organizations on Facebook and other social media sites. Many organizations will give you free information regarding doctors and specialists in your area. The most difficult thing I've ever done in my life is to get diagnosed with PD, but it's also the most rewarding in that I know what is causing me to be ill and I have a plan of how to deal with it and make the most out of my life. I wish you all the best and I pray for you to get the answers you deserve. Leo

Leo, Jul 15, 2013

Lisa, just read your post and can definitely identify with your symptoms, especially cramping in my left foot that makes me curl my toes while I walk. It is not painful but weird. Each doctor seems to disregard this. I have a slight occasional tremor in my left thumb and a very painful shoulder (I attributed this to playing sand volleyball). Have you gotten any type of diagnosis at all? Especially about the cramping in your foot that makes your toes curl. That one really freaked me out ass I walk a lot.

Todd, Mar 11, 2014

Hey My story is so simular to yours. I went for two years just knowing im not crazy. I have been diagnosed anxiety disorder, fibromyalgia , sjogrens syndrome and then refered to endocrine dr.... That appt is Feb 4. Luckily my husband talked me into finding a neuro dr that specializes in parkinsons.... I was there for probably an hour and was diagnosed the same day being i had been on carb/levo since may 2012. My official diagnosis jan 25, 2013 BY THE WAY IM ONLY 30.

shelly lege, Jan 29, 2013

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Hello Shelly,
I am glad to hear from you. I am sorry I have not responded to you earlier. I have not checked my story for a very long time. I am glad you were able to get a diagnosis, which is the first and more important step towards getting a treatment plan in place. I wish you and your family all the best. If there is ever anything I can do to help or if you just want to vent to someone who knows what you're going through, please do not hesitate to let me know. I'll be checking my story more often for comments.
All the best,
Leo

Leo, Jul 15, 2013

I have this idea that symptoms that generalize to a lot of conditions are exactly what doctors put aside. Not because they want to especially but because our society has narrowed down diagnoses to the end stage of any disease.
If you think about it, if you received an appropriate diagnosis in your first 6 visits the age of people who 'get' incurable diseases age would fall about 5 to 10 years. For our medical institutions to claim cures, the diagnosis of a disease like Parkinsons or Alzhimers must fall into the 60's or later. Exactly what would not happen if early and correct diagnoses were made timely. What would our society think if people were diagnosed in their 40's and 50's with incurable diseases that the medical community has conditioned us to believe are diseases of the elderly?

This is a long standing complaint and it is not about incompetent doctors; it is about the medical community being able to claim cures on the frontier for elderly diseases. To not 'see' these conditions early is required. I don't know which is worse, the idea of incompetent doctors or a collusion of medical groups to ignore the obvious for reasons of standing/profit.

katesisco, Jul 6, 2013

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I just read your comments. I've never thought of this before. You have a very good point and one that should be looked into more closely. I have not checked my story in a long time, but I am glad I did because your comments have got me thinking. Things have changed throughout the course of living with PD, but the fact that many young people from around the world continue to develop this horrific illness continues to grow. If you have any further information regarding your thoughts, please feel free to share them with me because it's of great interest to me. Best of luck to you!
Leo

Leo, Jul 15, 2013

hello leo,

if you dont mind can you tell what kind of medication you take......

my email id is rgoyath@gmail.com

robin, Aug 8, 2013

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My Doc said " I can't find anything wrong with you." I said "could it be Parkinson's" He said "you don't have the 4 classic signs and your MRI looked fine" he said " it might be a mental health issue". Yea doc, "I do have mental health issues, but that doesn't mean I don't have physical health issues as well"." I do know the difference of my mental health and my physical health!" and by the way doc Parkinson's isn't diagnosed from an MRI! 10 years now, new issues come up...nope no answers.. I just fired him! I am done with not being listened to. I am no longer waiting to educate my doctor...please just say you don't know...

Jme, Sep 1, 2013

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Thank you for sharing your story. I was diagnosed with PD in July 2013. I am 37 years old. Before that I spent 5 years going to every specialist around. Hearing how they didn't know or just didn't care. I was given various coordinating diagnosis(pelvic floor dysfunction, perpetual vertigo,etc.) and it took 3 neurologist before I was given a diagnosis. I was a special education teacher for more than 10 years. You are right... not everyone receives the care they deserve. Thank you for reminding us to keep fighting! Fight regardless of what it is and keep smiling! That confuses the doctors the most and gives you the best stories.

nicole, Oct 28, 2013

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Dear Leo, Each and every time I hear a story like yours I want to scream! So many of us have had similar experiences with so-called "medical professionals" who out of ignorance or arrogance have brushed us off, misdiagnosed, and yes, mistreated us at a time when we were vulnerable and afraid. You can find my previous comments about my own journey through the medical minefield somewhere in a past posting. While there is no question that I have received wonderful, beneficial medical treatment in the past from several dedicated, compassionate doctors, I believe that we find the Holy Grail of fighting this disease when we come to understand that WE are our own best advocate, and as each of us is an individual who's body, brain, and symptoms are unique to us, a one-size-fits-all model of care seems ridiculous to me. Having reached the limitations of what western medicine was willing/able to do for me, I felt challenged to gather my strength, roll up my sleeves, and thank God, had the good sense to swallow my pride and ask my friends and family for help. They are now my hand-picked care team, and are helping this lab monkey design my own care plan, one which focuses on the (documented) studies of the benefits of a vegan diet in the significant relief of PD symptoms, acupuncture for pain relief, (the most severe, devastating and mostly ignored symptom of my PD, which now includes the agony of severe and frequent episodes of dystonia) massage therapy, chiropractic, guided imagery, meditation, and yoga. I intend to start a blog to document my first 30 days. I strongly believe this program will significantly improve my symptoms, and perhaps give others out there information on alternative treatments to consider for themselves. I have long taken issue with the greed that so clearly dominates our healthcare system, allowing politics, big pharma, and insurance companies to prosper from the misery of the chronically ill. None of the alternative therapies listed above are covered by United Healthcare. None. Because if we are able to manage our pain and other symptoms naturally, it would be money out of a lot of pockets. Such treatments are proven therapeutic, readily accessible, substantially more affordable, non-addictive, and offer no harmful side-effects! Recommended viewing: the documentary "American Addict" Websearch " Dollars-for-Docs" see if your doctors are taking money from drug companies (mine were). Youtube: "Treating Parkinson's Disease with Diet". God bless and good health!

Susan, Jan 5, 2014

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i have pain in left and top of my head weakness and some numbness in my left arm,hand and leg

ricky brown, Jan 11, 2014

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Hi ya i suffer with blackouts in my left eye 2-4 sec, then i get sharp pains in left eye and numbness on my left face, arms and legs,then it cramps up before returning back to normal, iv had a mri scan whats come back clear, but now waiting on another test to investigate more, anyone got any ideas what this could be, has got alot worse as time has gone on, please someone give me ideas what u think this could be, in the mean time whilst waiting for more test iam on strong pain killers.

Debbie C, Feb 17, 2014

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Hi, I am 43 and have suffered with dystonia attacks since I was in my 20's. These attacks have gotten worse and happen when I am very tired or stressed. My right shoulder shoves forward, my hands cramp and little pinky sticks straight up in the air and my toes flex. This all can last up to 2 minutes and then go away. Lately my fingers have been feeling tingly and numb, my left hand shakes and I have noticed that it is sorta hard to write with a pen/pencil. I also have number little muscle twinges through out the day. I live in Alaska and this town does not have a neurologist. I have been seeing my family doctor and she has done numerous blood tests and everything looks fine. She noticed that I tremble when trying to touch my nose to her finger, and I have zero reflexes in my lower legs. When I am in bed and do a heavy long stretch and yawn, my hands shake ALL OVER. Well....that are some of my symptoms and I am waiting to hear back from my doc. Does anyone have any ideas what this could be? Help :(

Lee Ann, Mar 27, 2014

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My wife is 52 has had a tremor in her right hand and arm for the past year. She went to see a movement disorder specialist, and he diagnosed her with PD after a fellow did an exam on her. It was quite devastating to hear the news just abruptly presented without any discussion of how he arrived at a diagnosis. My wife and I did not accept the diagnosis because she has no other symptoms and sought a 2nd opinion from another MDS who said she didn't have PD, but another neurological problem of unnamed origin. This MDS was very nice when seen in-person, but very hard to reach and rude and inpatient on the phone thus we are seeking a 3rd opinion because the 2nd MDS did not follow through with ordering any of the tests she said she was going to. We are now going to a 3rd MDS this month. Reading the stories of all these horrible MD's that people have seen is very angering. It seems that MDs have a lot of difficulty in NOT KNOWING what is wrong with people, and instead of admitting that, essentially blame the patient, or worse give them bad advice causing needless suffering. Have they forgotten the Hippocratic Oath they took?! Do no harm! I know MDs these days are very busy and often stressed, but that is no excuse for poor bedside manner and lack of empathy.

Dolph, May 4, 2014

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Hi all,
I have read with great interest, all the discussions on Parkinson's Disease, and thank you all for taking the time to share your thoughts and experiences. It never ceases to amaze me just how many DIFFERENT symptoms people with PD actually do suffer and that no one person is the same as another.
My husband Ted, who is 72, was officially diagnosed last month (May 2014) after undergoing a barrage of tests.
I believe he has had P.D. for the past four years,starting from when he had Open Heart Surgery (Triple Bypass and a Valve Replacement),followed by a Hernia operation and a Total Knee Replacement. He had dreadful hallucinations after the bypass and Knee surgeries, and we initially blamed the Morphine but have since been advised that this is also a symptom of Parkinsons - hence we have estimated that four years ago, may have been the onset.
Ted's Neurologist is the best in his field and ran a barrage of blood and urine tests after the diagnosis. One of these tests showed that he had an Abnormal Protein Band which was 30 times normal. This indicated that he had a myleoma or leukemia. This is the most stressful diagnosis we have ever received. However, the Neurologist didn't have a marker to go by, and said that Ted may have had this for a long time or that maybe it was a very new symptom. Either way, we now have to wait a further 4 months before repeating the same blood tests again to see if the Abnormal Band improves or deteriorates. Only then, will he know what should/could be done about it.

We have a wonderful marriage, having just celebrated our Golden Wedding Anniversary (50 years).
Even now, I have learned about, and realise, that there are many huge obstacles we will have to confront with P.D. but I believe that with the understanding of family and friends, we can beat this thing - by working together.
It is important to let your family and friends know you have PD and for them to understand that as you progress, you may not be your old self, but that you are doing your utmost to beat this disease.

Another very important issue from my perspective, would be to talk to other sufferers via a support group - just as we are doing here now.
I have been through the past four years with my own serious health issues and am currently still on opioids for severe chronic pain of PHN after Shingles.
Stress plays a significant part in causing these problems and unfortunately, Ted was my carer during this veery stressful time, despite his undergoing major surgeries himself. I can thank God for having such a wonderful man in my life (and I trust he feels the same way about me) and I sincerely trust that I can and will, do for him, now that he has PD, what he has done for me in the past - be my rock!
Please understand the need for PATIENCE during your journey with your loved ones - it certainly will be a virtue for both the sufferer and the carer.
May God bless you all, and thank you all for caring.
Keep your chin up and do take care!
Warm regards,

Laurel, Jun 4, 2014

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Your tenacity and determination are very impressive.

I'm having similar (though not yet as serious) symptoms (now 39, first sure something wrong at 35) and I'm getting seriously fed up of being dismissed by doctors or sent for more physio/anti-depressants. Only seen one neurologist so far how pretty much laughed me out of the room (in front of a student of his) without doing a proper neurological exam, I'm not sure I can stand being humiliated by another one TBH. How you did it time after time is beyond me, I applaud you my friend.

Well done Leo, Jun 6, 2014

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your story is like mine. I am in my 40's , i seen 2 nuro drs. they did not give me any dx. i have bi-polar and they think its mental illness. i need to know what is wrong with me. balace is off, weak, shaky , walk like a duck, can not walk normal. memory lost. mucle pain. stiff , this is not bi-polar . even thou i have bi-polar. where can i go to get help. oh i was ref to phy thereapy.

karen, Jul 23, 2014

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Hello Karen,
Like many others have stated above, seeing a movement disorder specialist may be helpful in narrowing down or ruling out specific disorders. If you need help finding a movement disorder specialist in your area, please feel free to email us at apda@youngparkinsons.org or call at 1-877-223-3801.

apda, Sep 3, 2014

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