Stories

Elaine2

My Journey

Diagnosed at 36

My journey began over two years ago when, upon waking, I began having difficulty moving and the initial "getting going" was very troublesome. I saw my primary care physician (PCP) and he informed me that it looked like I had Osteoarthritis; not an uncommon diagnosis for a middle-aged mother of three. I began taking an Ibuprofen regimen.

As time passed, I saw my PCP several more times because the medication was not working. He referred me to a Rheumatologist, in the belief that I still had arthritis because all other tests were normal. A week before I was to see the Rheumatologist, a new symptom emerged that couldn't be ignored. A tremor started on my left hand mainly affecting my thumb and index finger. I contacted my PCP and he assured me that everything was ok, but ordered a CT scan and MRI because of a family history of MS. All was normal and I saw the Rheumatologist who reviewed my medical history and many test results. The doctor did not really know what to say. Here was a young woman with a tremor that moves like a snail sitting in front of him with perfect x-rays, blood tests, and imaging results. He sent me home with a "trial" diagnosis of Fibromyalgia and a large bag full of pills that made me sick, including a harsh one for depression because I started crying in his office. This also rendered me with an emergency appointment to a Psychiatrist. I even began to think I was completely crazy. I tried this for five months.

On September 24th, I walked in to my PCP's office and told him, "I have had enough." One look at me and he was on the phone with the Chief of Neurology, who brought his entire team down to see me. After viewing my vast medical history with my PCP and conducting an extensive neurological examination, the doctors agreed that I should be hospitalized for some trial medications that might work for me. I still did not have a diagnosis, but inside I felt this was the path I was looking for.

They only needed to try me on one medication. With the first dose of Carbidopa-Levodopa, I felt an improvement that I thought was completely impossible. I felt better and more in control than I had in over a year. Second dose, I was walking and turning better. Third dose, my tremor ceased completely for five hours. I was elated with these results. On September 25th my life changed when the Neurological team came for their rounds and saw my improvement. I was suddenly numbed inside by the silence in the room and all 15 of them staring at me. The Chief of Neurology quietly sat by me and, with a concerned expression, told me that because I had such a dramatic response to the medication, it was confirmed that I have Parkinson's disease. I had only very briefly heard of this disease before. He told me that when he viewed me walking, my arm did not swing as it should, my gait on the left side was very different than my right, and I had more difficulty with my left hand and foot than my right. I showed positive signs of rigidity, decreased facial expression and bradykinesia; this could only be because of the lack of dopamine that is produced by my brain. 

The magnificent medication that was given to me in the hospital did not make its way home with me. The doctor informed me that there is a window of time that Sinemet works well and then there can be complications such as ON/OFF periods, where it doesn't work properly or at all, and let's not forget dyskinesia. He said it would be easier for a physician to give this medication, which will only work its magic for 5-10 years, to someone that only has an approximate lifespan of 5-20 years. He did not think it was a good option for me, a young mother of three. I came home from the hospital and spent the last couple of months believing that, until scientists find a better alternative, I could expect a lifetime of medication cocktails to try to control the symptoms, and living at 70-80% efficiency.

Through the wonderful education and suggestions from APDA, and better communication with my doctor, I found out that despite Sinemet's side effects, avoiding it completely isn't always the best route for everyone. These terrible side-effects don't happen to everyone, and if they do, alterations can be made to the prescriptions, and there's also DBS surgery. I spoke with my Neurologist about my quality of life. How debilitating it is to have to force myself to walk, not to mention embarrassing. Today is December 1, 2010 and my prescription of Carbidopa/Levodopa SR should be arriving by mail any day. My doctor and I both find this encouraging.

32 Comments

I suggest you try out different neurologists who specialize in movement disorders to determine which is the best fit. Not all neurologists are familiar with the specific issues those of us with Young Onset Parkinson's deal with. Also not all medications work the same for everyone. Please try not to get discouraged. There are some wonderful people out there who are more than willing to share their information and referrals with you. Keep your thoughts positive and know you are not alone.

Tonya, Feb 20, 2011

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I have not been diagnosed with PD but I have been suffering for over 5 years with all of the symptoms of PD...I am now 43. I too cried in the rheumatologist's office, I too was labeled severely depressed...I too was diagnosed with Fibromyalgia. I understand your journey. I hope to visit a neurologist soon (now that I have insurance) and I continue to hope for answers. I wish you the best :o)

Lisa Ring, Feb 22, 2011

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Sinemet is wonderful. My dr. says that we really do not know if the drug stops working or if it just cannot cover the more advanced loss of dopamine. I'll use it as long as it works and if I need to use an electric scooter later, I'll tool all over the world in it!

Suzanne, Apr 3, 2011

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In my recent experience,for making Sinemet have a longer effective life, may I suggest you all speak with your health care physician/specialist about a trial of Vitamin D in the gel cap form only. You need to take an adequate amount to do some good or it will not work AND you need to monitor your intake amount closely as you can take too much to your detriment. Fortunately there is a blood test you can take which will help your physician flag a situation where they can determine if Vitamin D is ok for you to continue taking. It has been a miracle because when I tried it approximately three years ago, within two days I HAD TO CUT MY DAILY DOSE of three of the four prescribed medicines I was taking for PD and at very high dosages ... by a full 25%!!! I am sill at this reduced by 25% level some 3 years later with very light degradation of function over the past 3 years. I have taken sinemet steadily since 1996 or about 15 + or - years now.

Bill Groth, Apr 26, 2011

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I felt a tremor in my right arm at age 45. A close friend who is a neurologist watched me very carefully for over a year and then sent me to the dept. of neurology at the University Of Michigan where I was diagnosed with Parkinsons almost immedately. I took Sinemet and several others for 20 years and was able to be a DBS candidate in 2009.It has changed my life. I am now almost symptom free and take a very low dose of Sinemet only. There is life with Parkinsons and a new life with DBS.

Patty DeYoung, Jun 10, 2011

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I was diagnosed with PD 2 1/2 years ago. I'm a Registered Nurse and it is becoming more difficult to do my job. Writing and "off" times are cumbersome; soup is off the menu! I went to a neurosurgeon yesterday about DBS. I want/need to talk with someone young and female who has had this procedure. I'm 49 and I need to work. Sometimes the pain of getting out of bed is terrible! Knowing that exercising is crucial is stressful for me because I feel like I'm existing in mudd. Everything is so slow. I have a hard time expressing how I feel. I'm depressed because I can hardly move and hardly moving makes life depressing. Does anyone else feel this way?

Lisa, Aug 9, 2011

patty, en que hospital te diagnosticaron y trataron?

francisca, Dec 11, 2012

Lisa, I was diagnosed with PD in 2001, I was 45. My main symptom was fatigue and a change in my gait. I also had dramatic changes in my hand writing. After 10 years I still have no noticeable tremor, and the slight tremor that only I notice is completely stress related. I didn't take Sinemet for the first two years or so, using instead Marepex and Amadadine. I have resisted raising the Sinemet dose for several years opting for functional rather than normal. For the past year and a half I've been off the Marepex entirely it made me extremely sleepy, to the point of narcolepsy and caused some obsessive thoughts that were quite annoying. At every step of the way I've had to shake off the urge to go with the conventional wisdom. I have a great neurologist at the VA who trusts me to guide my own treatment. She seems to understand that I have a brain and live with this thing every day. I have tried consultations with some big name clinics and doctors, and she has supported me every time. The results have ranged from quite distressing and disruptive, to confirming that what we were already doing was working well. My realization in all of this is that, while a physician partner can really help, they can't make it go away. I have terrible pain first thing in the am getting out of bed. You're the first other person I've heard discuss this. I have a pretty high pain tolerance, but some times I really dread it. The thing I have discovered in all of this is that I have to keep my life about more than PD. If the only thing I get for struggling through the pain of getting out of bed is another day with PD, what's the point? We are all more than a diagnosis. I struggle with slowness and not wanting to exercise, and people asking "how are you doing" and having no real desire to hear the answer. Parkinson's is teaching me things that I would have never wanted to learn had I a choice. I can't say that I'm open to the lessons every day, but I've learned to be thankful for the lessons I never would have learned without PD. I look at DBS as something I will use when its all that's left. My "ace in the hole" if you will. I have been able to shift and adjust meds, exercise, and work schedules, leisure activities, and other things to get relief and stay positive. For me managing stress, keeping engaged and seeking new interests and physical activity are all essential. My fear about DBS at the two and a half year mark is, what do you do 3,5, or 10 years from now? I hope this helped, hang in there and remember you are a valuable person. Keep talking to us, you are not alone.

Chuck Vilord, Aug 10, 2011

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Lisa, I am a combat vet of Vietnam and was diagnosed with parkinson's in early 2010. I currently take two meds for the disease, carba-dopa and ropinirole for the RLS that developed while taking the carba-dopa. beware that there are often side effects but the positive results make it worth while. Since taking both meds the shaking in my right hand has diminished and my gait is better, however I seem to fall asleep at the most inopportune times- while reading a book and once while driving. my wife now does most of the driving. Good Luck with your nursing!!

smitty, Oct 21, 2012

Check out this new article that just came out this week:

Deep Brain Stimulation May Offer Lasting Benefits for Parkinson’s Disease

Study: Patients Continue to See Improvements in Tremors 10 Years After Surgery
WebMD Health News

http://www.webmd.com/parkinsons-disease/news/20110808/deep-brain-stimulation-may-offer-lasting-benefits-parkinsons-disease

APDA National Young Onset Center, Aug 11, 2011

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I have been experiencing a great deal of the symtoms of PD with muscle spams and tremor of my left hand mainly in my wrist and thumb. the problem is i often don't even know my hand is vibrating quite a lot until someone points it out to me. but when i attend my GP often the tremor isn't visible. i tried to hold my hand in all different positions to see if it brings on the tremor, but to no avail, which meant my GP only sees a general shackyness which appears to be related to anxiety. Recently over the last week i noticed when my hands are down at my side if i move them into a specific position my whole wrist and thumb does all the vibrating i've been experiencing for over the last two years. Does this mean its not PD because i can hold my hand in this certain position and it starts to vibrate.
Also i have a lot of other off and on symptoms such as my four toes on both feet curl inwards and both my hands are becoming claw like in particular on my left side. i also feel generally unsteady and my hand writting has changed completely. there are many more symptoms such as my head somtimes shakes if i put my head back a bit more than my normal posture. Also very occassionally my left arm goes completely rigid and at first the pain is very bad, but after a very short time the pain eases and i can reach down to my left hand, which is almost clenched and pull it out of the positon but if i don't pull it right up to just under my chest it springs back into the spasm with the severe pain and i have to start agin. this has only happened to me twice over the past month, but it took about four times on both occassions to find out that i needed to pull my arm right up out of the spasm. can anyone tell me if any or some of this sounds like PD, in particular the volantory trmor part. thanks A

Anne Hynds, Jan 23, 2012

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Hi Anne, I've been dealing with many of the same symptoms as you for the past 10 years or so. I have slowly eliminated all unhealthy habits which may have explained or have been the cause of my symptoms, such as, I used to smoke, I drank perhaps more frequently than I should, I drank a lot of diet soda, I ate not so healthy, and so on and so forth. I was diagnosed at the time I began my reformation with Ulcerative Colitis, and I can honestly say that whenever my colitis symptoms were bothering me, my arm and hand, which back then was predominantly my left arm, would get very, very stiff and my hand would tremor. Since removing all possible aggravating factors and adopting a very healthy diet and lifestyle, I still suffer with these symptoms, and now they seem to be affecting my right arm as well. Every now and again I have a really good day where my arm is completely relaxed, the muscles are supple and I am tremor free, but this is a rare occasion. I have found that stretching exercises help, hand exercises help and I started using Baoding balls for hand agility, which have made a huge difference. I notice that if I do stretches involving the lower back and legs, as well as the shoulders and neck, I relieve the tension on my arms. I also take supplements which are vital for cellular energy and reducing inflammation, such as creatine, L-glutamine, ubiquinol, iron, zinc, alpha-lipoic acid, and all of the B-vitamins, but especially biotin and methylcobalamin, which is a special form of B12 which absorbs better. These I take sublingually (under the tongue). Oh, I also read a VERY informative paper about the benefits of coconut oil. It was written by a doctor whose husband was losing control of his body and becoming listless. After cooking his meals in virgin coconut oil she saw marked improvement. I too have noticed that coconut oil is very helpful. It is made of medium-chain triglycerides (sorry, I am biochemist) which the body won't store as fat but will use immediately as though they are sugars. This is vital for brain function since the brain is responsible for 20% of the bodies energy needs. I hope this helps you. Please feel free to email me at michaelr1073@yahoo.com with comments or questions. I'm not a doctor, but I no longer take ulcerative colitis meds since my own independent research has led me to ways of dealing with my condition without pharmaceuticals, so I like to think I'm not stupid :) I'd love to hear how what you're trying is working as well.

Michael, Sep 8, 2013

Hi Anne,

We would suggest seeing a movement disorder specialist who specializes in diagnosing Parkinson's disease. Some of the symptoms you are describing does occur in PD, but it would be best to get it checked out. To find a movement disorder specialist, please contact your local Information & Referral Center. http://www.youngparkinsons.org/how-we-can-help/information-referral-centers. You can also contact our center directly at 877-223-3801.

Warm Regards,
APDA Young Onset Center

APDA Young Onset Center, Jan 25, 2012

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Hi, I am 40 yrs old and new here but I ran across this site hoping to find some answers. This past Mother's Day I started having trouble with my memory; forgetting things that I had done, even forgetting my last name. I then developed a speech difficulty called Apraxia (I had a very hard time getting even two words to come out of my mouth), I became very weak in my left side and had numbness as well. It then went in to several more problems....my left foot dropped, I started having a few tremors, "electric shock" and tingling in the back of my neck and into my head, vision problems, and many other issues. Since then I have had an MRI, CT, Spinal Tap, EEG test, and a ton of blood work. I was told so many different things...maybe it was a stroke, maybe ALS, most likely it is MS, and when none of those were proven with the diagnostics testing I was told that I probably have "Conversion Disorder" which is a "stress related neurological malfunction" and that I needed to take some antidressant medicine and maybe see a psychiatrist! This did not make any since to me because I had not had any traumatic event happen that could have thrown my mind into overload...BUT, believing that the doctors know what they are doing, I accepted it and went about my life, all the while suffering so much. I started taking therapy 3x a week (which I MYSELF had to request since none of the doctors were even offering to give me any help) and taking an antidrepression drug as well as a pain medication. None of these were helping. Even therapy was so difficult for me because my left side is so weak and my foot drags the ground. I was given a platform walker with an arm brace attached to help stablize me, an AFO (foot brace to lift my left foot of the ground), and a wheelchair because I was too weak to go anywhere.
About 2 or 3 weeks ago I started having more tremors to where I couldn't sleep at night, my arms jerked so bad that my husband would reach over and hold them down for me so that I could rest. I began to have muscle tightness and stiffness and noticed that my skin is getting really oily. I talked to my physical therapist about my tremors and she told me to ask the doctor about a medication that they give to people with parkinson's disease so that is what I did. Just this past Friday I went in and told him that we have to do something. This is really weighing me down. I can't walk without assistance, I can't drive because I can't think properly, I have trouble walking without getting so weak that I feel like I could collapse and now my tremors are so bad that I cannot sleep and at times have to wear wrist weights to hold my arms steady enough to eat or drink. He put me on a medication and said this, "I am not syaing that you have Parkinson's Disease but I just want to try this medication to see if it helps." He gave me Carbidopa/Levodopa 3x a day and told me to try it. I started taking the medication this past Saturday and I am absolutely amazed. My tremors are almost completely gone for at least 6 hours at a time (I take the med. every 8 hours, my left leg doesn't "ache" like it was and it even feels stronger (my foot is still dropped and I still have to wear the brace), and overall I just feel quite a bit better than I did before taking it. Even my physical therapist was so excited yesterday when I went to therapy. I am not supposed to see my doctor again for a month or so but I am really looking forward to telling him this. However, I do have a question that has been running though my mind the past couple of days....If this medication is helping me already and I have only been taking it for 3 days, does this likely mean that what I have IS Young Parkinson's Disease? I know that you all (on this site) may not be doctors but I have seen soooo many doctors (PCP, rheumatologists, neurologists, hemotologists) and none of them have given me "hope" of finding out what is actually going on with my body. SO, I welcome any comments from those who may have gone through some of the same things that I have with doctors.

Misty in KY, Sep 11, 2012

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Hi Misty,

Do you know if the doctor you are currently seeing is a Movement Disorder Specialist? A movement disorder specialist is a neurologist who specializes in Parkinson's disease. While a general neurologist can certainly diagnosed PD accurately, a Movement Disorder Specialist sees people with PD every day and is more likely to have seen patients with Young Onset PD. To find a Movement Disorder Specialist in your area, be sure to contact your local APDA Inforamtion & Referral Center: http://www.apdaparkinson.org/information-referral-centers. You can also contact us directly with any questions at 877-223-3801 or apda@youngparkinsons.org.

Warm Regards,
APDA Young Onset Center

APDA Young Onset Center, Sep 11, 2012

I am a 38 year old woman who has been experiencing "weird" symptoms since 2008. I first went to my GP because I was extremely fatigued, and having trouble with my grip and had a tremor in my right hand at rest. I was told that it was stress as he knew that I had one child in college, one starting his senior year and another in middle school in other words a very active life, as I worked full-time and had returned to college to finish my bachelors degree. I accepted this because I also told him that I felt very anxious for no reason and was having trouble sleeping it felt as if I never got any rest even though I was going to bed. Next I began to lose the joy in life and just get through the day, so I went back and he felt that I was depressed due to the added responsibility of my husbands employment being mostly traveling for long periods out of state. In 2009 I went to him because I could no longer read my own writing and thought maybe I had carple tunnel syndrome and that I had begun dropping everything, tripping having sprained my ankle three times... I was having trouble with simple things it became a joke at our house that I wasnt allowed to unload the dishwasher because we were he out of plates. Again stress - so I just felt that I was not being heard and would just deal with it, I began to feel like a whiner which I am not. In January of 2012 I began having problems with my right side to the extreme in fact my family noted that I had become left handed. My husband began complaining about my ability to keep our bills organized and he said I talked in circles and cleaned the house in circles, our ability to communicate fell apart because he said I was not finishing what I was starting to say and acted like he never told me anything... I began to have to make lists for everything because I just could not seem to know when and where I needed to be. Finally on March 4, 2012 I woke up to go to work and fell to the floor ...of course my husband got me up but he could not understand what I was saying...I tried to hold a cup of coffee and it just hit the ground...he took me to the er and upon their neuro exam the Dr. had me airlifted to Grady Memorial stroke unit....well I did not have a stroke and they noted arachnoid cysts and an abnormality in my spine but I was sent home with the good news that I did not have a stroke they thought it was complicated migraines or a movement disorder....and advised me to follow up with a neuro if my walking and coordination did not improve within 3 days...well it did not in fact I could not climb stairs or sit or stand without assistance...neuro examined me and said it looked like MS so we did a spinal tap two days later...he felt it was in my spine....well that came back without any indication of MS but my vitamin D and B12 were low so he suggested I take supplements and since I have a strong family history of Parkinsons with a grandmother who had Cortico basil ganglion degeneration I try to get into mayo clinic....the following week I fell again and realized that it was an inability to bend my leg and support myself that caused the fall...so we went to the MSCA for a second opinion regarding MS....the exam revealed poor reflexes on the right side and movement disorder...the Dr. ordered a complete spinal MRI with contrast as she felt it could be MS concentrated in the spine...well it is not MS - as a side note we do not have insurance and have literally spent every dime of our savings for spinal taps MRI's and specialist appointments... I use a cane or walker every day, I cannot button my pants, I cannot shower without assistance, and have now developed the tremor in my left hand....who has any suggestion as to what kind of Dr. I should see now...I give up ...I need a Doctor in Atlanta to diagnose me and help me gain back some of my quality of life if that is possible...I am sure that I am not the only person who is "too young" for this but it is happening anyway...also my GP has run all other autoimmune disorder tests to rule out Lupus etc., does anyone know of any Dr's in Georgia, Alabama, or Florida that specialize in movement disorders? if so please share we have no problem spending the money to find out what exactly is wrong with me and I would love to quit taking meds to treat symptoms and begin taking something that will possibly give me back some quality of life...I am entering into the part of my life in which my children will be getting married and having children and I want to be there for that, I want to hold those little ones...I want to get some answers any help will be much appreciated.

Kerrianne, Dec 28, 2012

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Hey Elaine,
I just submitted my story for consideration. Diagnosed in 2006 I too wanted to limit Levodopa as unrelenting Dyskenesiais worse than a resting tremor. I underwent Activa therapy- otherwise known as Deep Brain Stimulation. I reduced my meds., my Parkinson's mask was lifted and immediately went skiing and skydiving-https://www.youtube.com/watch?v=G-KY55hDYxI

My prayers are with you.
D.-

David Dorsey, Feb 12, 2013

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Hi Elaine, your story is almost identical to mine. God bless you. I know the feeling. Julie, age 41

Julie Nichols, Apr 14, 2013

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For about six months or so when I would lay down for bed, as soon as I closed my eyes I would have this electric blue light start out dim and then slowly brightened until it was so overwhelming that I had to open my eyes again. Then I had rapid eye movement---back and forth, up and down, and all around. I thought that it was ocular migraines…so I did not give it much concern. I then noticed that I was having trouble with balance and I would end up on one foot trying to prevent myself from falling. I also had a hard time getting up from a sitting position, and taking baths…forget about it! I thought that this was from arthritis in my left hip and degenerative disk disease. I just kept explaining things away.

On April 2, 2013, I woke up fine, and then all of a sudden I had a shooting pain that went to the back of my head, on the lower right side. This happened every time I closed my right eye, or rolled my right eye to the right. My eye did not hurt...just had the shooting pain in the back of my head. This was all day over the next three days, and I would end up with a headache on the right side of my head from this pain.

On Friday, April 5th, I woke up to a pain in my right eye, and no pain at the back of my head, and I just didn’t feel good, but I had my English class at 8 am…so I had to go to school. I noticed that my writing was a little wiggly…like if you are nervous or anxious. I tried to write, but my hand just felt really tired. By 10 am the right corner of my mouth started to twitch, and I felt like it was numb…like when you go to the dentist for dental work, and I kept feeling like my right hand was going to sleep.

By 11am, my hand felt heavy and it had a tingling feeling, and it was impossibly hard to write. I thought that I might have had high eye pressure from an infection or something like that and it was affecting me this way, so I called my eye doctor, told her my symptoms and she said that I needed to get to the emergency room right away. I called my daughter and asked her if she would go with me to the emergency room, and as I was driving, the right corner of my mouth was twitching a lot, and my thumb and index finger on my right hand started twitching really bad.

By the time I got to the emergency room, the right side of my face was twitching, my arm felt heavy and somewhat numb...but my right hand was trembling and the fingers were twitching and locking. I then thought that I was having a stroke, the EKG was normal. The twitching, and severe shaking got worse...my eyes had rapid movement—back and forth, up and down, and then blinking almost like the blinking lights on a railroad crossing...but much faster, and the muscles in my cheek were rippling, then my jaw was rotating, moving side to side, and up and down, then my head began to bob and weave and move in circles...I looked and felt like a hot mess! The blood work came back normal, the MRI was normal...they gave me a muscle relaxer that worked within 15 mins. They diagnosed me with a medicine induced dystonic reaction and Parkinsonism because I take Lamictal.

I spoke with my Psychiatrist and he said that it was not the Lamictal, but it could be the Adderall that I take, so he took me off of that. My hand was still shaking, and twitching, and I still could not write well. My right eye still felt like I had gotten punched, and I noticed that I was slurring my words and getting confused on things that I know. I called and asked my Psychiatrist if he would refer me to a Neurologist because something was just not right!

This was on Tuesday, April 9th, I was able to get into a Neurologist on Thursday, April 11th, I could not even fill out my paperwork, and my daughter had to do it for me. My eyes were blinking rapidly, right corner of my mouth was twitching my hand was twitching; speech was slurred if I spoke more than a few sentences. The Neurologist had me perform tests—like taking my finger and making a big figure 8 in the air at my side, and I couldn’t do it…jerky movements, confused about what a figure 8 looked like…then he had me do the same thing with my left hand…and that was worse. He had me close my eyes and I would lose all sense of balance. My maternal grandmother had Olivopontocerebellar Atrophy, and I have many of her first symptoms…but he said that it was not that because it is something that happens later in life.

The Neurologist was so vague…said I needed to have an EEG, and didn’t say much more. I was told to bring my MRI scan, and he didn’t even know that I had brought them…and I told him that I had given them to the nurse…and he said he would look at them later. The EEG paperwork had diagnosis of Parkinsonism, Dystonia and headache. I had the EEG yesterday…and now I am just waiting to find out what is going on!

Today in My history class I started to write my name on my quiz paper and I felt a small tremor, my hand started to shake and I have to really concentrate on my hand when I am writing…it feels like I cannot grip it…then my hand started shaking, then twitching, then my arm was shaking…I tried to control it…but when I did it only twitched more. My lip started, then my cheek and then my eyes…it is hard to keep them open when I have the rapid movement and blinking. Then my head started twitching. Then my leg started (which I did not have before)…then I had minor twitches in my left leg. I had already emailed my teachers about what was going on…so when I started having this reaction in class, my teacher stopped class and told me that I could go home if I wasn’t feeling well, that he was really worried. I am really stubborn and I was not about to let this (whatever it is) stop me from living my life! So I stayed the entire class but I was so embarrassed because I could hear the comments from the students who sit behind me. I felt like a freak! It took an hour and a half for this to stop.

My grandmother’s tests were originally normal…they could not figure out what was wrong with her for over five years. I know this is not medicine induced, and I know that this is not in my head! I am not going to let these doctors or anyone else make me feel like I am crazy, or it is in my head. I know something is wrong. I am really tired, and I just feel sick. I am unable to eat much and that has been like this for the past two days.

Does anyone have suggestions of what to do next, and what I should do to make sure that these doctors don’t push me aside?

Ja-Ann, Apr 17, 2013

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It sounds like there could be a number of possibilities. Are the doctors you've seen thus far movement disorders specialists? If not, we would recommend you consulting with a physician who is. These are neurologists who are fellowship-trained in diagnosing and treating Parkinson's and Parkinson's-like disorders. If you are in need of a referral, contact us or your local APDA National Young Onset Center: www.youngparkinsons.org/early-onset-parkinsons-help/apda-centers.

apda, May 1, 2013

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OK I've had resting tremor on right side of body, no arm swing on right side, sore muscles in legs, right arm aches when cooking, washing and brushing my hair..... Constant sore neck on left side so tired all the time I feel like I neversleep.... My right side always gets sshooting pains, my shoulder cramps up, hips hurt when rolling over in bed wake up in morning with calfs sore..... I was told by neuro that I had essential tremor..... But I don't belive that I do... Tremor in whole arm and hand only three fingers affected are thumb, pointy finger, and middle finger.....I waiting to c a new neuro but does this sound like early onset of pd????

Renaee Doutch, Jul 9, 2013

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Hi there , im 47 yrs old i have more or less the same symptoms has you have , i have a resting tremor in my left hand which i have had for a couple of years but my gp always put it down to being aneamic , recentley i have had terrible stiffness and neck pain down my left side and for last few months have felt so stiff when getting out of bed and getting up from a chair again my gp blamed my thyroid problem , i returned to my gp as my tremor was getting worse finally my gp refereed me to a neurologist who seems pretty confident that i have early parkinsons disease, i am awaiting a MRI scan to rule out other conditions , but the neurologist said one way to give a definate diagnosis of PD is to prescribe the drugs if you respond then its PD , i was prescribed Rasagiline which i have been taking for 3 weeks now and have definately seen a improvement The difference between essential tremor and PD is that you have a resting tremor with PD in essential tremor your tremor is more noticable when your doing something , hope this helps

Michelle, Aug 25, 2013

My name is Allan and I was diagnosed two years ago. I have heard all the stories of doctors and diagnosis issues and doctors diagnosing the odds rather than the symptoms. I still find it amazing how one disease has so many features and presents itself so different for so many. Sinemet has been life changer for me. I get so very lonesome now. I cannot work from exhaustion and pain and wish group to talk to.

Allan Zuckerman, Sep 14, 2013

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AZILECT worked miracles for my depression and my fatigue. I am 35 and was diagnosed PD by a MOVEMENT DISORDER SPECIALIST, PD SPECIALIST DR. Karen Thomas at Sentera Princess Anne Hospital in Virginia Beach VA.

As one person commented save the DBS as a Ace in the hole. I would go my route

yr1 and current AZILECT

yr 2/3 after diagnoses MIRAPEX and Effexor for fatigue.

saving PROVIGIL and LDOPA/Seniment for future help. It TOOK ME 1 FULL Year just to get my body up to 1.5 mg of mirapex I had to start with 1/16th mg 3 times a day (start small doses to avoid harsh side effects) but it works.

Jason STCLAIR, Dec 12, 2013

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Care advice that has changed me for the better...try to minimize your stress...see a top PD doctor to get the best knowledge in medicine rx so you can control your symptoms, eat organic--- you do NOT need more toxins exacerbating your illness!...exercise daily! ...know that its ok to rest if you're tired (sleep heals and helps our brains), eat healthy foods, and do things to stimulate your mind....our brains are able to rewire around the damaged synapses if we challenge ourselves. Your doc should test your vitamin D levels. Learn what is relaxing for you. Ask for an antidepressant.....Lexapro has been the best for me. Be happy.....the above steps can help you minimize your symptoms, and i believe stall the disease. You must take control. I have found playing piano, walking, and xc skiing to be the best therapy for me. And Carbidopa/Levadopa has changed my world! there are worse things that can happen to us...take steps to manage your illness and you will be amazed at how good you can feel. Your body reflects who you think you are. Be healthy.

Jan Hill, Dec 29, 2013

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Hi everyone! For the past ten years, I have had tremors in my head and hands. They are always there but sometimes are worse than other times, like when stressed or anxious. My neck is often stiff and my head feels very heavy all the time. I hold it up while sitting at a table. The toes on my left foot sometimes tingle and lock with sharp pain. Not very often, my left eye will twitch and it is a little droopy, always. My speech is somewhat slow or mumbled. My family and friends noticed my head tremors before me. My mother had these symptoms too but she was told it was caused by anxiety. Could this be MS or PD?

Ellen, Jan 7, 2014

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There is a procedure called deep brain stimulation for Parkinsons. Please check into that with your doctor's. My brother works for medtronics and travels the country performing this procedure. I too am having issues with tremors the past month and I am only now looking for answers.

John, Jan 9, 2014

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I too was diagnosed with Fibromyalgia. Fuchs dystrophy, IBS.

I am having difficulty typing as I have tremors and weakness in my left hand ( sometimes my right hand)

I have difficulty with thought speech and spelling. Yesterday having spent hours on the computer - I forgot how to use it.

I sat staring blankly at the monitor.
I have had MRI's EMG's hundreds of tests. I am a mother and grandmother and 58 yrs old

I take prozac, gabapantin, and ( blank thought, can't remember what pills I am taking )

both my PCP and neurologist suggested I might want counseling. I have been referred to a Rheumatologist, as I have arthritis.

no second opinions at this point, I can't take the looks, like I am nut's and doing this just for attention.

My PCP say's the good news is I am healthy. ( The bad is I am crazy I guess )

Sad in Wisconsin, Jan 27, 2014

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Hello everyone. I am a 52 yr old electrician, and my tremor began in June. I had some other symptoms that make more sense now prior to that, like biting my tongue when going to sleep at night, and a lot of pain and numbness in various limbs. About the 4th time my right hand began shaking I was sent home from work until I saw a doctor. The initial diagnosis was Essential Tremor, but now I have an almost constant twitch in the right hand and right thigh.Both are resting tremors, so I believe it's PD (I have to get back to the neurologist but am not working at present.)

I have developed a few symptoms on the left side - a twitch in my arm and sometimes face. My back pain is incredible at times. I had a period of a week where I could barely stand. My balance comes and goes, but not much trouble walking or driving. I am going back to work soon, but expect they won't keep me there long. What's next - disability? I've worked hard my entire life, and find this pretty depressing.

Morgan, Jan 27, 2014

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Hi everybody,
Just to say how horrible this illness is stops me from doing son much.But mine was diagonosed 20 years ago and was given Botox injections in the neck because of head tremor called essential tremor have always managed everything gym holidays driving cooking can now do hardly anything the tremor is all over don't think the Botox are doing anything now but cannot have them in arms or legs my G.P says anxiety.but I won't take antidepressants.Always thinking is it PD.l
Joan 21st February 1914

Joan, Feb 21, 2014

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hope you found the answers you were looking for! depression, anxiety and reduced gait, weak and slow muscle movement, as well as bradykinesia (uncontrolled movements of the muscles) are all associated with PD. If you haven't seen a neurologist already, contact your local Parkinson's association and they will help in getting a name and number of a good neurologist in your area. Good luck! I was diagnosed with PD in 2010 and there is life after Parkinson's!
smitty

Re: Kerrianne, Apr 5, 2014


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WalterPi, Mar 15, 2014

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