Early Onset Parkinson's?

I bit the bullet and saw my Doctor Wednesday 3/11/2015. We are doing blood work to check my thyroid and she has put me on Lexapro (not too thrilled about this) to try and get the tremors to stop and to calm my anxiety. I am a bit annoyed by the visit, only because at first I felt like I wasn't being taken seriously. I guess after I have taken the Lexapro for three months, if those few symptoms out of the (what feels like a million) symptoms, don't subside or stop, they will then want to do a MRI and a CT scan. So now I guess for those of you who were diagnosed early, what was your experience? What steps did your doctor take?

My Symptoms:

Frozen Shoulders

Rigidity in my joints and muscles

Tremors in my hands, face and legs

Terrible balance ( I stand up I lose my balance, while walking if I suddenly turn I lose my balance ect.)

Anxiety

Dizziness when standing

Trouble communicating at times

Forgetting words and forgetting how to spell

Seeing words and thinking they aren't spelled right when they are like my brain doesn't recognize the word.

Walking seems difficult. I feel like my legs and feet are heavy and weighed down.

More and more I am noticing new symptoms. Any and all insight and knowledge and your experiences are all greatly appreciated.

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  • National Parkinson Foundation - Joseph Jankovic, MD

    What are the different forms of Parkinson’s Disease?

  • Parkinson stages

    Parkinson's disease strikes people in many different ways, leaving them to experience a broad range of symptoms. Though symptoms may be mild or severe or occur frequently or infrequently, Parkinson's disease appears to have five different stages. The time spent at each stage varies, and the skipping of stages, from stage one to stage three, for example, is not uncommon.

    A healthunlocked.com/parkinsonsmovement member from Colorado reports being in Stage 1 for the past 12 years.

    Parkinson's disease stages include:

    Stage one: During this initial phase of the disease, a patient usually experiences mild symptoms. These symptoms may inconvenience the day-to-day tasks the patient would otherwise complete with ease. Typically these symptoms will include the presence of tremors or experiencing shaking in one of the limbs.

    Also during stage one, friends and family can usually detect changes in the Parkinson's patient including poor posture, loss of balance, and abnormal facial expressions.

    Stage two: In the second stage of Parkinson's disease, the patients symptoms are bilateral, affecting both limbs and both sides of the body. The patient usually encounters problems walking or maintaining balance, and the inability to complete normal physical tasks becomes more apparent.

    Stage three: Stage three symptoms of Parkinson's disease can be rather severe and include the inability to walk straight or to stand. There is a noticeable slowing of physical movements in stage three.

    Stage four: This stage of the disease is accompanied by severe symptoms of Parkinson's. Walking may still occur, but it is often limited and rigidity and bradykinesia are often visible. During this stage, most patients are unable to complete day-to-day tasks, and usually cannot live on their own. The tremors or shakiness that take over during the earlier stages however, may lessen or become non-existent for unknown reasons during this time.

    Stage five: The last or final stage of Parkinson's disease usually takes over the patients physical movements. The patient is usually unable to take care of himself or herself and may not be able to stand or walk during this stage. A patient at stage five usually requires constant one-on-one nursing care.

  • Knowing your symptoms and charting them can be of great benefit. I have created

    the most complete List of 100+ Symptoms. Send me an e-mail and I will send this list on Excel and a How to Use the List sheet.

    macbunch@Hotmail.com with 'Symptoms' in the top subject area.

    Anyone reading this is welcome to receive this. Please share the information.

    Charsie

  • Hi Stolc. My 1st symptoms started at age 29 in 1963. I was only diagnosed with Pd in 1992, 29 years later. The reason for taking so long to diagnose the Pd was that I did a lot of exercise during those years. I took Sinemet and Symetrel for the 1st 2 years and stopped those when I was put onto an MAO-b inhibitor called Eldepryl (Selegiline). In 2002 my condition had improved so much that I was able to come off the medication and have lived a 'normal' life since then. I still continue to walk for 1 hour 3 times a week, other than when I have other health problems.

    I don't want you to think that this will work for everybody, because we are all different. I am not a doctor, only a patient with 52 years of experience dealing with Pd.

    If you want to learn more about what I did, other than asking questions here, which I will answer; you can go to my website - reverseparkinsons.net and read over 400 articles on various aspects of Pd.

    I would like to make you aware that NO PD MEDICATION is capable of reversing or even halting the progression of Pd. They mostly try to deal with one or two of the many symptoms. The problem with all medication is that our bodied adjust to the medication, which means that we have to take more and more of it as time goes on. Soon the medication has no further effect, other than the many severe side effects that can come with each one of them. At that stage, there is nothing much you can do about it.

    Rather try the exercise route and see what it can do for you! I know you have said that you have problems with balance and steadiness but that might have something to do with not being physically fit. You don't have to start by doing one hour every 2nd day you can start by doing 5 minutes at YOUR FASTEST PACE! You might well be advised to do that with someone firmly holding one of your arms, so that you can't fall. Read more about this in my website. Fitness has a profound effect on overall body wellness, so you will gain all round with this approach.

    Good luck

    John

  • After a year and a half since diagnosis, I'm still sticking with 'alternatives'. Besides the mucuna pruriens which I take for tremor, two natural supps that I feel of significant help are NAC (a glutathione precurser) and a newer 'optimized' version of curcumin (far more bioavailable) called 'Longvida' which I found helpful with balance issues among other things...

  • Hi metacognito,

    I tried taking NAC for a while, but it gave me annoying stomach issues well before I could judge whether or not it might be useful, and I had to stop. Can I you how and when you take it? For instance, with food, on an empty stomach, in the morning or at night time?

    Thanks.

  • Hi Earthling...

    RE NAC (n-acetyl-cysteine): I take 'Now' brand's 600mg capsules 2x p/day - before breakfast & before sleep (on empty stomach). For details on this and other supps that may be of help for various symptoms of PD pls check out Dr. Ray Sahelian's recommendations: raysahelian.com/parkinson.html

    Cheers

  • Thanks you for that. I will look at the website, which sounds very useful.

  • I notice that the dose recommended on the website is 100 to 250mg per morning. You're taking a much higher amount than this, so I'm just wondering did you try this and not find it to be enough?

  • Lexapro - an antidepresant of the SSRI type. Your symptoms seem to be a fairly normal collection for a person with PD. For a newly diagnosed person one might expect constipation, loss of sense of smell, muscle cramps and your handwriting might start to become less legible. There's probably loads of other symptoms that you will notice over time. My list amounted to 40 symptoms and there are still plenty more to choose from. The wikipedia entry on PD gives a fairly good list of possibles.

    So, depression is'nt on your list although it could be as it is commonly to be found in early stages of PD as well as later on.

    I don't see why you need an antidepressant though. I mean as a newly diagnosed` person how could you be anything other than a bit pissed off a bit down, a bit disappointed that things you had planned for are now going to be rather more difficult to achieve, more planning required and perhaps a bit more help.

    I would have thought taking medication for a symptom that you have not said you have and if you did have depression that was due to PD then it would be more appropriate to treat the PD as a primary cause not in isolation from PD. But don't take any notice of me I'm not a medically trained person just someone with an observation to note.

    I would have guessed that the first medication you could have been given would be something like Sinemet and as an adjunct Selegiline.

    The main ingredient of Sinemet is Levodopa which occurs naturally in the brain as part of the process of making Dopamine. Dopamine shortage is what results in so many symptoms. Also in Sinemet is Carbidopa. This prevents the Levodopa being absorbed into body tissue other than the brain. If Dopamine is given directly with no Carbidopa then very much larger doses of Levodopa are required, In the past people often complained that Levodopa made them feel bilious.

    Once an amount of Dopamine has been used Selegiline is used to prevent that amount being metabolised thus keping more Dopamine available for re-uptake and re-use.

    Some drugs, in particular those in the group of drugs known as Dopamine Agonists may be best not used because the withdrawal symptoms are very unpleasant. Do a search on HU within the Parkinson's Movement community for DAWS to find more information.

    Generally, lots of PD drugs need to be taken carefully and in particular care should be taken to wean yourself off them slowly. A consequence of stopping suddenly and this is unlikely but still needs to be guarded against that consequence may be Neuoleptic Malignant Syndrome (NMS) which is potentially fatal. Also this is more likely if you have been taking the drug for a number of years and with higher doses.

    There's so much more. Give yourself a few months to become more familiar and at home with all this.

    Just in case your doctor didn't mention it and no one else has either. PD is not fatal.

  • My neuro gave me a DAT and could see that my brain was lacking dopamine.

  • All of the above is great information. Never assume all your health issues are caused by Parkinson's. You did not mention what type of doctor you are seeing. If you have not seen one yet, I strongly encourage you be examined by a Movement Disorder Specialist. They are neurologists with a specialty in Parkinson's. Depression is a component of any chronic disease and the use of anti-depressants even though you may not recognize the symptoms in yourself is common. My husband didn't think he needed an anti-depressant either but family members noted an improvement while he was on it.

  • It is extremely important to get an MRI to rule out any other cause. NPH mimics PD but is correctible thru implementing a shunt and can be caught with an MRI. lifenph.com/

  • I stand corrected. I shouldn't have said "an MRI instead of a DaTscan," but rather "in addition to."

  • My message to Newbies…

    Sorry you had to come here too but welcome to the ‘island’. Hopefully we can help you. I just came ashore myself a couple years ago and was uncertain at best, a little scared and a little depressed. I can tell you from my perspective, you will get a lot of advice here (often contradictory) but more often helpful.

    This is my message to new arrivals. It is my gleaned understanding and beliefs since my diagnosis. It is free advice so at worse the price is right. On the other hand, it has been over two years since I was formally diagnosed and everyone including my wife and Neurologist think I appear notably better. I feel better for sure. So…

    1.Be positive and hopeful. The world hasn’t come to an end. Five years ago they (collective they… whomever ‘they’ are) predicted a cure for PD within five years. The problem obviously is tougher than ‘they’ thought. But progress has been made. So I am willing to wait a few more years for ‘they’ to solve it. In the meantime:

    2.Clearly finding a PD neurologist who you feel good about (trust, is sensitive and is current) is a key first step. Do your homework (google and learn current options). Ask your neurologist about the latest treatments!

    3.It is important to note there is no positive test (MRI etc) to diagnose PD. Tests only eliminate alternatives. It is also important to note that PD is like snowflakes… no two occurrences are exactly alike but there are things to try that work for others that may very well work for you.

    4.There are current meds and other non-med meds (homeopathic) that are directed at three distinct objectives:

    -Slowing the progression while we wait for ‘they’.

    -Treating the symptoms (tremors, stiffness)

    -Treating depression/anxiety that many get when they are dealt this hand.

    I take Azilect (rasagiline) because it is believed to slow progression. A worldwide, multi- institutional clinical trial of rasagiline ’s potential for neuroprotection was published in 2008 and follow-up data from the original studies has also been examined closely. These results suggest that the use of rasagiline earlier in PD may offer the greatest long-term advantage and modify the symptomatology over time, although true disease modification remains unproven

    I take Sinemet to alleviate my tremors..

    I take Prozac (Fluoxetin to be exact) for anxierty– maybe I am a bit Pollyanna… maybe this is why.

    I believe you have little to lose and a lot of benefit to gain from homeopathic supplements so I also take Vitamin B-12, Ashawaghanda, Cinnamon, Vitamin D3 and Vitamin K2. Do they work… they seem to be for me. I have less tremors, move better and am much more productive. I am not going to stop to find out. I recommend trying some of these to see if they help you.

    5.Movement - Exercise is the best treatment for slowing progression, e.g., (Qigong, shadow boxing, dancing around the house, walking or just getting up from my PC at least once every half hour. Tai Chi (or just moving exaggerated slowness while shifting weight from foot to foot) sometimes with eyes closed preferably in the middle of a big room. Balancing on one foot than the other. Bottom line: you got to move it… move it! You got to move it… move it! Develop an exercise program that works for you and do a little more each week.

    6.When you are not moving, exercise your mind - for me, Sudoku and Cryptogram – do them every day. Also, Blogging with you!

    7.Foods you eat may (some will most likely) exacerbate your condition. I found carbs and glutton make my condition worse. I even switched to a glutton free vodka. It has helped me. I suggest keeping a food log as part of a daily diary.

    8.Get a good night sleep and take a nap… PD drains you. You need to recharge! If you are too anxious or depressed to sleep you may need Prozac and/or a sleep aid. Get your zzzzzz’s.The best thing you can do to manage tremors is to take your medication consistently and on time. The timing of medication for Parkinson's is key. it's important to work with your doctor to adjust your treatment schedule accordingly.

    9.Take your meds with meals. Drink a lot of water regularly through the day. As you age you lose your sense of thirst but not your need especially with meds.

    Hope some of this helps!

  • 4000Nights I wanna be voted off the island lol, I loved how you describe what works for you I was diagnosed only a few months ago I also have arthritis was diagnosed at 5 so the docs weren't sure what was going on so I went for 5 yrs thinking it was arthritis when I kept falling and my knees would "give" out had cervical spine fusion 3 discs removed and cadaver placed c3-c5...imagine my neurosurgeons surprise when I was diagnosed he was ready to back in a explore why I was having so many issues that mimic a nerve trapped...My gp told me she thought I had Parkinsons or Parkinsonism so I went to a neurologist who said yes he put me on carbidopa-levadopa which made all the difference ...It's a crazy disease that mimics so much it's a wonder anyone can get a straight diagnosis

  • I love what you describe it almost the same sintoms that I have tks for your post

  • If I was early in the disease I would certainly walk as much as possible. I would also start bright light therapy which works slowly but avoids the problems of the other medications. bronowski.org/education-and... Be aware that some doctors have used vitamin b-6 as a treatment. If you are not on sinemet or stalevo (both contain carbidopa) then I would recommend a good daily b-complex vitamin. After you're on the carbidopa vitamin b-6 can only be taken in smaller doses.

  • Not true. B6 has no effect on sinemet.w

  • been a year but sine met knocks out b6 if I recall

  • It doesn't.

  • forum.parkinson.org/index.p...

    Also I take megadoses of b6 (p5p to be exact as it is safest form) and I have found it has no effect on sinemet.

  • Is the dr a neurologist and one who specializes in movement disorders? You didn't mention your age or whether the dr mentioned any diet changes or exercise routine. This site provides lots a valuable information. I've had PD symptoms since 2012 but wasn't diagnosed till last June. I'm on 1mg of Azilect and turmeric, coconut oil, N-acetyl-cysteine and on exercise program that includes lots of stretching and walking, all provided by my neurologist. I live. In Colorado and am 71.

  • You will hear this so many times, but it's true, everyone is different. PD is like so many other diseases....a DAT scan is the only one specific to Parkinsons as it measures the dopamine in the brain. My husband had one and it came back inconclusive to PD but abnormal and to be watched. He is currently taking Zandopa ( mucuna puriens) 3x a day with supplments and doing very well. On the memory issues Keen Mind, sold in AU has been amazing. It has been used in clinical trials and proves to be excellent for him. Hang in ...exercise is most important.

  • My husband was like you 2 years back, he was trying to brush it under the carpet but he caved in because he was so bad. He seen our GP who prescribed him Simnemet. The one thing I have found out over the past few years is that GP's DO NOT KNOW ANYTHING ABOUT PARKINSONS. They just give you something that will boost your dopermine levels until you get to see a Neurologist. In my husbands case the wait was 16 weeks, the simnemet did help a little to begin with. Anyway I immediately started to research all I could on PD. I found a Neurologist who specialised in PD and movement disorders I managed to get a private appointment with him, although it is a long way to go its worth it. My husband has never looked back his meds were changed immediately within 2 weeks his tremor had disappeared, eventually his energy levels returned, shoulder pain gone, sleep improvement, he is a new man. Don't get me wrong he does have some off days, but don't we all, keep positive exercise, and try to get the best treatment you can. If my husband waited for his Hospital appointment with a neurologist right up to the appointment day he still did not know if he would see the neurologist or his assistant, or even a nurse. x

  • I was taking Lexapro before my illness hit and I continue. I've had a bad tremor on my right side for about three years and the Lexapro hasn't curbed it. I'm surprised to hear it may have that affect. Just my experience. Say, why did your doc advise an MRI instead of a DaTscan?

  • Let me rephrase that! An MRI is indeed important to rule out other causes, although the DaTscan is specific to Parkinson's. Right?

  • I agree with the folks that say you need to. See a (mds) neurologist- movement disorder specialist. Also, if you see your regular doc before u. can get in to see an mds, ask herabout sinemet. It usually works right away ( if it is going to). An is a

    good indicator that you have P D.

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