Saturday, April 2, 2011

Early Warning Signs of Parkinson's Disease

Precursor Symptoms of PD - What's the Tipoff? And What Were Your Earliest PD Symptoms?
In retrospect; in hindsight; if only I'd known; I wish I'd looked for more answers; why didn't the doctor say something?  I should have...done something more... 
If the precursor symptoms are recognized as Parkinson's disease, can early intervention at least delay the onset? 
Earliest warning symptoms of Parkinson's usually go ignored or are attributed to some other condition. There isn't a single symptom you or your loved one can have that is unique to PD, although as a group some are more unique. There are diagnostics which can rule out some many differential diagnoses even at this early date.
The biggest impediment to addressing the developing Parkinson's disease after the early warning signs or precursor symptoms appear is that we do not recognize them for what they are. We don't even know what they are.
  • Leg drag
  • Lack of Arm Swing
  • Loss of Sense of Smell - decreased sense of smell - phantom smells
  • Changes in Handwriting
  • Changes in Voice
  • Change in Facial Expression
  • Pain or achiness in the Shoulder or Neck, more common in women
  • Depression, anxiety, stress
  • Sleep problems - especially with especially with REM sleep or more specifically RBD sleep. Sleep issues may also include "acting out" during sleep: Yelling, kicking, punching. 
  • Signs of specific Vitamin Deficiencies: Ds and Bs especially
  • Sharp small pains - pinprick pains - or perhaps small areas of numbness
  • An odd type of vertigo - which may actually be Orthostatic Hypotension which is known to develop years before the actual PD diagnosis
  • Dizziness
  • Adding additional symptoms beginning 4-05-11 with THANKS to the folks at Patients Like Me
  • Urinary issues such as urinary incontinence or frequency
  • Impairment of color discrimination - may improve with levodopa
  • Fatigue - tiring more easily at routine tasks - lack of stamina - daytime sleepiness
  • Cramping
  • Rhinorrhea - that's a runny nose to most of us
  • Seborrhoeic dermatitis -  an autononic symptom, an immunodeficiency - flaking is often confused with dry skin - possibly seen as dandruff
  • numbness - usually in extremities
  • We would like to learn if people experienced any of the following as precursor - earliest - symptoms
  • Sleep apnea ?
  • Constipation
  • RLS - restless leg syndrome?
  • Excessive sweating - an autonomic nervous system dysfunction?
  • Personality changes or changes in Executive functioning
  • Hyperhydrosis or excessive sweating which can sometimes appear as Seborrhoeic dermatitis - might feel like hot flashes
  • Erectile Dysfunction
  • Vision issues such as dificulty focusing
In an era when there is access to symptoms of every conceivable disease at our fingertips, there is little information about PD precursor symptoms on the Internet. If you do a web search, you won't find much about them.  I just did that and mostly what I found were articles I'd already written.  
Think back to the months and even years before your diagnosis, what do you recall of the precursor symptoms?  We're talking about those symptoms which you attributed to being tired, to stress or anxiety, to physical exertion, to anything but PD because that wasn't even a consideration. 
So you are X-rayed, MRI'd, you have endocrine tests, thyroid tests, blood tests and a few more for good measure and that's good because it makes sense with these early symptoms. But PD doesn't show up on these kinds of tests currently. And then what happens?
The doctor rules out a condition or two and then gives you the verdict: "Well, you don't have X*X?."  And that's it. You pay your bill, you go home, your spouse asks what the doctor said and you say, "Well I don't have X*X?."   Many of us have been trained to accept this kind of negative diagnosis, but that's wrong.  We can all do better. 
As families and patients we have a right to expect some positive action.  And doctors should certainly know this. That message needs to be sent from the patient base if it isn't taught in medical schools.  As patients we have a responsibility too.  We have to overcome the relief that we don't have X*X? and the fear of what comes next and we have to ask, "What comes next?"
The very early warning signs are now being recognized as an significant area of study but the symptom list is not ready for prime time yet. The communication from the research front will be forthcoming when the studies have been completed. The good news is that studies are now underway.
These studies represent a way in which people with PD can contribute.  Even if we can't improve the future for ourselves, we can use what we have learned to improve the precious future of someone else, perhaps our children or grandchildren.
Listed at Clinical Trials.gov are three studies of especial interest:
  1. Investigate neurophysiologic tests that have the potential of serving as screening tools- New Haven, CT
Another source of information is found in the notes in patient files tucked away in doctors' offices. This is the information that needs to be shared at seminars, in articles.  There would be no HIPAA violation, names would not be named but the symptoms could be compiled.  Yes, it is a huge undertaking but it would make a remarkably useful study.

Our best body of knowledge now comes from proactive patients who share their stories.  Not all are sucess stories but they demonstrate the importance of a the current studies and the importance of a productive doctor-patient relationship.
It is far more important for both the medical profession and the general public to raise their awareness of early warning symptoms of neurodegenerative diseases, especially Parkinson’s disease, because treatment can begin earlier. Now that there are more treatment and therapy options, it makes sense to try to slow onset.

What we are wondering is whether the immediate treatments will lie more in Alternative Medicine in the form of Nutritional Supplements rather than in pharmacological medications.  What will be the role of therapies such as Forced Exercise?
Previous posts on subject:
Questions about Parkinson's Disease

You might also be willing to contribute to the knowledge base by registering to participate in an NIH study:
Study Link for Biomarkers of Risk of Parkinson's Disease at the National Institutes of Health. 
Check our this discussion of the Top Ten non-motor symptoms of Parkinson's disease from Dopadoc.

15 comments:

  1. I am a 56 year old female. My mother has parkinsons, diagnosed about 3 years ago. I am living with her and help her do chores and bath. I have been extremely tired. Neck aches, shoulder, I fell today, could not keep my balance, very afraid I WILL BE THE ONE WHO INHERITS THIS CONDITION. PLEASE ADVISE.

    ReplyDelete
  2. The first thing anyone is going to tell you is that you are under considerable stress and are exhibiting those very symptoms.

    Since your mother could be eligible for some in-home nursing care, this is the time to learn of those benefits and to make use of them.
    You need some pampering as well. Perhaps medical massage would be of benefit for both of you.

    But you didn't write about that, you are concerned that you have an inherited form of the disease and are manifesting precursor symptoms.

    I would suggest that you and your mother make use of the PROGENI study for LRRK2
    (you'll have to cut and paste this link)
    http://progeni.iu.edu/getInvolved/index.asp
    and
    The 23andMe study which has already made progress in learning more about PD genes.
    https://www.23andme.com/pd/

    There is research in another method of lab testing for the presence of dopamine in the brain but that is years from completion.

    Please keep a chronological journal of all symptoms, when they occur, meds and supplements you are taking so that you will be prepared for your doctors visit.

    I know you are physically and emotionally exhausted but this is the time to take the best care of yourself for both your future and your mother's. If you have siblings, they need to be advised that you will need a few days off from time to time.

    When you see your doctor you will beed to be proactive because you know that STRESS will be the first and only focus unless you are insistent. That doesn't mean the issue isn't stress but that doesn't mean it is the only possibility. You could have both.

    Fallig early in not that common unless you have other signs of postural instability. Be prepared to explain that fall: how you were feeling before, how you fell, whether you had a cold or sinus infection or other ear problem also at the time. They'll start with blood pressure and go from there.

    Our advise is to follow up on several of the suggestions we have made - don't just pick one.

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  3. I'm a 63-year-old woman. As you said, people could have many of these symptoms for a variety of reasons. What I wonder is if people who develop Parkinson's may have had these symptoms for decades before ever having something they might describe as Parkinson's and there may be clues that should be followed up on much earlier. I cannot remember when I was able to sleep without aid and usually have horrific dreams. I was born deficient in B vitamins. I've had neck/shoulder pain for years. I have always lived with depression and anxiety. I've had RLS in the past but not currently. All of those things are easily attributable to other things. I have difficulty focusing, which I've been attributing to my astigmatism. As you wrote, any time I've gone to a physician about problems, his answer has been "stress." Now both arms, but particularly the left, are having tingling and numbness. I also notice that when I hold a spoon it seems fine until I bring it to my mouth and then it begins to shake. That started me looking online and I saw this post. Only one of my 8 aunts had Parkinson's, and my mom did not; however, I'm thinking this may finally be the time to pursue this.

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    Replies
    1. Just diagnosed with pd. had rls for years and tingle in left arm for over a year.

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  4. Since there is no cure for RLS, it could be that those symptoms are under control.

    Because PD is actually a collection of syndromes with varying symptoms and rates of progression, it makes sense to pursue further diagnosis both to rule out conditions and to focus on a diagnosis which will lead to effective treatment.

    Are you tested regularly for vitamin deficiency?

    PD tremors are usually at rest tremors as opposed to the action tremor you describe. Actually some of the symptoms you describe do sound like B12 and B complex deficiency.

    Are you treating the anxiety? Behavioral therapy? Counselling? Medication? Supplements? Yoga or Tai Chi?

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  5. What an eye opening article! I cannot believe, I put in the medication I was on, and it brought this up. I have not one of the symptoms you listed, but ALL. They have danced MS with me for years, then said NO, your just under too much stress, of COURSE I AM, I AM A FEMALE ...right? It is funny, I watched a very old episode of a TV show recently, where just this thing occured. The lady went to the DR, she was in pain, tired and just felt bad, his answer: Your under stress. He sent her home dismissed as an over emotional female. Not long after, she went back she saw other Doctors until she found out...she had breast cancer. I am weary of the attitudes of Doctors. I will add one VERY IMPORTANT factor here, that EVERY WOMAN SHOULD DO:

    GO GET COPIES OF YOUR MEDICAL FILES!!!!! You will NOT believe what some phy. write about you, even those you THINK are you friends...they arent! Thank you for this input....and good luck to ALL!
    Enlightened!

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  6. My husband, 50 yrs old, is concerned about PD. His grandmother had it and he feels he has similar symptoms. He had a stroke (TIA) 7 yrs ago and recently had a radical prostectamy for cancer. He has tremers every now and then in his Rt hand /arm when he eats and for the past 7 yrs, he loses his balance quite often. Within the past yr he's complained about sore, stiff legs and has had rls for yrs. He has also complained about numbness in the back of his head off n on. He says this is what his grandmother went through during the early stages. When he explained it all to his pcp ...he was immediately referred to a neurologist. He is also on weekly vitamin d2 for almost a yr now.

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  7. My husband, 50, has recently become concerned about PD. His grandmother had it and he doesn't know any health info on either side of his family. He had a stroke (tia) 7 yrs ago and just this past March, a radical prostectamy for cancer. He takes vit d2 once a week, is diabetic (dr says it's under control) complains about numbness in the back of his head, rls, has tremers in his Rt hand at times while eating and loses his balance from time to time (getting worse) while walking. When he explained this to his PCP, the dr didn't hesitate to refer him to a neurologist.

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  8. I was diagnosed with hypoKalemia or potassium deficient only 5 months after giving birth to my daughter who is now 12 yrs old. When it gets worse, I can't lift my arm much less walk without falling down so I crawl. I am still on medication - kalium durules. whenever my condition gets worse, doctor would order that I get KCl drip until my K+ level goes back to 4.0. Year 2009, I had bell's palsy and I thought was cured after therapy but from time to time my face still gets deformed as described by my family. My smile isn't the way it was anymore. Lately, I have been experiencing numbness in my right hand particularly all fingers. I went to my doctor and was told my K+ level is okay at 3.0. I am currently taking both my potassium meds and b-complex. Is it possible that I may have early signs of PD? what tests are necessary to find this out?

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  9. In 2008 I strted having numbness and tingling on my right side along with the following - no more multitasking, bored easily, depressed, not able to sleep, and at any moment I wanted to fall asleep. I had MRIs, CTs, etc... and they ruled out MS, Bells Palsy, Lupos and treated me for migraines. Continued having problems bt finally gave up and lived with i.

    2010 it started bothing me lot again and now I has weakness in my right leg but the neuro I went to told me I needed to see a shrink. There was nothing wrong with me in 2008 and there wasn't going to be anything wrong with me now.

    Now it is 2012 and I am again trying to figure it out. I have the same numbness and tingling but I now have a tightness in my right side - arm, leg and sometimes torso. I also get very weak on the right side. 2 weeks ago I had a very sharp and extremely painful pain in my right shoulder followed by the tightness. It would come and go and at times I would also have numbness and tingling in the arm, leg and face. This lasted for a week. A week to the day of the first sharp pain I was hit again. The same type of pain shot from one shoulder to the other and up my neck. After it was over and I tried to speak I was copletely hoarse. Later I became so week on the right side I could barely use my arm or leg. The next day I went to the hospital. I stayed the weekend and the did the usual, MRI, CT, bloodtest and found nothing. I am now seeeing a nuerologist but he is treating me for migraines but my symptoms are not going away.

    I have been reading up on Parkinsons and I would like to list my symptoms and see what you think.

    I get what we call "episodes" where I go completely limp and feel like my muscles dont want to work. During this I breath weird and sould like I am on some crazy drug.

    Started with a twitching finger (it gets very tight and I have a hard time moving it) and now have it in my hand and foot. All on the right side.

    Numbness and tingling, tightness, weakness in right side.

    One toe on my right foot will go completely numb sometimes.

    I get a horrible pain in my neck. It is a tightness and I catch myself trying to pull my neck to stetch it but it doesn't help.

    I notice that I hold my arm close to my side because it is so weak/tight and sometime limp because my leg is so weak.

    I do not sleep well. I wake up every few hours and I have violent nightmares. I wake up yelling and I catch myself before I hit my husband.

    This summer I noticed that I was sweating more than usual. I thought I might be going thru early mentapause but I live in Miami and everyone I mentioned it to said "no, its just hot outside"

    I have to keep changing deoterant because I will start to smell even if I haven't been sweating alot.

    I always have tons of hair fall out but my hair is not thinning.

    My hair has become very oily. My hair has been dry my entire life and now it feels like I need to wash before dinner.

    My face has become very oily and it was not oily before.

    I am constipated but I have been most of my life.

    I often have problems getting words out properly. I will usually stop and wait and later I will try again.

    Right after the pain shot from shoulder to shoulder and up my neck I started wanting to swallow alot and the other day I took my son to the movies and fell asleep while there. I woke myself up becasue I was choking on my own saliva.

    It has not happened often but I have noticed that I lose my balance at times.

    And the newest symptom started yesterday when both sides of my jaw tightened and it felt like I couldn't open my mouth. I didn't tell anyone it happened and when I tried to answer a question from my son he replied with "Mommy, are you faling asleep? You sound funny" He told me that he could barely hear me and I was talking very slow.

    What do you think?

    Btw, I am a 39 year old female and I do have PD in my family but it is my 2nd cousin.

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    Replies
    1. Well dear u sound like u have really suffered with this & one things 4 sure - if u have gotten a dr. that tells u go c a shrink & u KNOW this is very real & not in ur head --- then get urself another neruro --- & get as many as it takes until u find one thats on the ball!! I went thru EIGHT in 2 yrs & finally found ONE that was able 2 help me! AND IM A NURSE!! So I've been there with those that tell u theres nothing wrong & those that tell u maybe u should consider seeing a shrink bc its in ur head & it if was hard for ME 2 find a gr8 dr. then I know it cant be easy for the
      average person out there thats not in the medical field!

      So u just dont give up!! But one things FOR SURE!! U dump those docs u have tried in the past & KEEP DUMPING THEM until u find one thats on board with u!!!

      And also - try an Endocrinologist along with the Neuro just 2b sure ur
      hormones r right & theres no pituitary trouble. And dont take it from any other specialist but an endocrinologist about ur pituitary & hormones - blood test results can be tricky when it comes to hormones.

      And oh - may sound weird but sometimes weird things can do weird stuff so get urself checked 4 lyme disease. It may not show up in regular bloodtests if uv had it 4 a long time & being that it all seems to be on one side u'd think it wouldn't be lyme - but I've seen that stuff give
      ppl CRAZY symptoms!!

      I hope u feel better! And sleep is 2 important! Get meds if u have 2 for sound sleep bc sleep helps ur body heal....=)

      Delete
    2. So do whatever u have to do to get GOOD SLEEP! Even if it means taking a med to get it!!! Just remember to alternate ur meds about every 6 to 9 mths bc u do not want 2 build any tolerance to any sleep meds esp. one that works gr8 4u!!

      Hugs... =}

      Delete
  10. I'm a 45-year old female. Doctors have been trying to find out for some time why I am having various problems:
    *my hands go numb, my arms and hands tingle
    *I am always tired
    *I feel little tremors in my hands like they are shaking inside my skin
    *smells drive me crazy
    *I can't remember words and struggle to concentrate
    *I don't sleep well and have crazy dreams
    *I am perimenopausal
    *random sharp headaches in the temples and forehead that don't last long
    *dull headaches that won't go away
    *neck and shoulder pain
    *jaw snapping while asleep
    *constipation and diarrhea
    *cold extremities

    I take thyroid medicine and Vitamin D supplements. I have clinical depression and take Zoloft. I stopped menstruating at the age of 43 and I've taken both estrogen and progesterone supplements. I've been to a physical therapist to try to relieve the tingling and numbness and neck and shoulder pain. I've had a colonoscopy. I use oxygen when I sleep but it doesn't seem to help. I wake up gasping for breath. I'm having hot flashes.

    These symptoms may just be random things but what is really bothering me is that my hands feel like they are shaking inside, and I can see them shake sometimes. Mostly though I just feel it. My father died of ALS and I've had other relatives with dementia and related tremors. I'm hoping I'm just generally unhealthy and a hypochondriac.

    What do I even do to find out? What tests can detect PD once it's started?

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  11. Dear Anonymous,
    One problem with a multi-symptom situation is that we often see the specialists for each separate symptom. Have you been to a neurologist with your entire list?

    Some of your symptoms could be related while others might not. My guess is that you are hoping that some of your symptoms are stress related and yet several point you in a few other directions. Diagnosis may require a neruologist, an endocrinologist or another specialty but since you already know there was ALS in your family, please begin with a good neuro.

    While the genetic results for ALS are not in yet, it is known that in some cases, the earlier the onset of treatment, the longer the lifespan.

    And don't be afraid to return to share the results because they will most certainly add to the knowledge base as well as the discussion. And because we care and want to know how you are doing.

    ReplyDelete
  12. Hi im 36 year old female and ive had right hand tremor for 4 years but now has gone to my thumb and pointy finger.....i have tremor in right leg ,my muscles ache and have trouble getting out of chair and trouble rolling over in bed....my neck is always sore and i clench my jaw all the time,i have pin prick feelings in legs sometimes and feel tired all the the time .....i lose my balance and my hand writing is very tiny.....my hand cramps up wjen brushing my little girls hair and aches and wen im upset or its very hot my tremor get worse to the point i have to hide it.....i get burning in right foot and have a limp that comes and goes and wen ppl are talking to me its like my mind is on something else and i have to say sorry what did u say????could it be parkinsons

    ReplyDelete

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