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DaynaE

First Doctor visit for Parkinson's symptoms - now VERY confused!!!

28 posts in this topic

** UPDATE 1/31/17  see page 2 ***

I was researching Parkinson's a few weeks ago and was astounded to find I had
well over 20 symptoms. I made a doctor's appointment with my Primary doctor.
That visit was today and I left the visit even more confused.

He did not do any tests other than to have me grab and squeeze his fingers,
and stand, while he gently prodded my stomach. He did NOT have me walk
to see my gait, he did NOT stand behind me to pull me back and see how
my balance was. He stated my slight tremors were not bad enough, that
he would not do anything for Parkinsons unless I was in full blown shaking
tremor mode, and wildly shook his hands to demonstrate. He said the
Parkinson's med side effects are worse than the symptoms, but he would
run basic blood tests to see if it something else.

I was taken aback that he did not ask me my list of symptoms or ask to
read it. I would think almost 30 symptoms would warrant a referral to a
movement specialist or neurologist, or at least a chance to go over the
list with him, but he didn't think so. Is this all in my head or did this doc
just blow me off?!?!? Here are the symptoms I am having on a very
regular basis:

Hand tremors - pill rolling movement
Some tremors in leg too
Rigidity in hands - muscles flex
and cannot move fingers
Similar happens in legs and
feet.
Problems getting up or out of
car.
Once out, cant get going
quickly - slow shuffling gait,
walk hunched over
Easily lose my balance.
Lose balance in shower leaning
back to rinse hair
Dizziness when getting up or
bending over/standing up
Definite loss of sense of smell
Severe fatigue
insomnia, difficulty falling
asleep
Waking up frequently
Have to get up several times
to pee
Nighttime leg cramps/spasms
Sleepy during the day
Handwriting seems smaller
Short term memory loss
Difficult to make decisions
Difficulty multi-tasking
Difficult to comprehend things
Difficulty judging distances
Speech changes - softer
Apathy - no interest in anything
Urinary issues - constant need
to pee and incontinence
Constipation is back big time
Blood pressure increased
last year - first time ever
Depression starting in due to
apathy

If anyone has suggestions on my next move, it would be greatly
appreciated. I don't want to wait until this is so bad I am unable
to work. I am only 50 and need my job, however these symptoms
are already creating havoc at work and at home. Thank you.

DaynaE

Edited by DaynaE

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I agree.  This doctor is lazy.  Get another one, then ask for a referral.  I, too, was dismissed as a possible nut case, not just once but three times.  Finally, I had to take charge of my own health.  Fired the lazy doctor, and went to a another one.  Got a referral to a neurologist, who then referred me to a movement disorder specialist.  I knew something was wrong, but didn't suspect PD.  Well, I have PD.  Probably had it for years.

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Most Primary doctors or GP's depending on you location, only have minimal training in all neurological conditions. My Primary told me flat out I did not have Parkinson's. At the time I did not have a tremor. He did agree to send me to a neurologist to be sure something wasn't wrong. Well here I am, 2 years later, and I have Parkinson's.

 

I suggest you find a new Primary if you need the referral, or Find an MDS (Movement disorder specialist)or a good

neurologist who knows about Parkinson's

 

Good luck

 

Blessings, Adam

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Agree with Adam.  You should ask for a referral to a neurologist, preferably a Movement Disorder Specialist.  You don't say how long you have had your symptoms but your doctor may have been overwhelmed by the number of symptoms you are experiencing.  Parkinson's disease creeps up on you very slowly (years, not weeks or months) so a timeline of symptom onset would help any doctor sort through your situation.  Keep us posted.  Gardener

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I never had resting tremors.  Your doctor is profiling and I am sorry to hear your PCP acted on limited knowledge and did not refer you to a specialist.  PD isn't about being shaky or not.  

 

Like others said, get a specialist.  Also like others, I spent too much time chasing problems in poor health (years).  It is tough to get diagnosed, but it sounds like your symptoms are obvious to those who recognize them.  Finally, I went to a hospital ER when I couldn't walk.   Not one neurologist said Parkinson's and they basically said I was nuts after testing for everything else. 

 

Then I went to a private Neuro who took a glance at me and knew I had it right away. He followed up with testing to be sure, but he was pretty convinced because to him (and others) it was obvious.  I later found out others who knew someone with PD suspected I had it, but nobody would say something.  I understand because it would be awkward, but it is frustrating.

 

I hope you get an answer quickly

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I agree with the others. You should try and make an appointment with a Neurologist, preferably a MDS (Movement Disorder Specialist). Nobody here is saying that you have Parkinson's but you need to be seen by the appropriate specialist. Gardener has a point in you don't say how your symptoms developed. If they came on quickly and not over a long period of time, you should make an appointment with a specialist immediately because that might indicate something more serious than Parkinson's.

 

Dave

 

P.S. Some of us with PD have very little or no tremor. I'm 3 years into my diagnosis and have a light tremor in my right hand/arm and right leg. I'm what my doctor calls a rigid dominate version of Parkinson's. No two people with PD are alike, hence the reason they calls this a snowflake like disease.

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I agree with the others. You should try and make an appointment with a Neurologist, preferably a MDS (Movement Disorder Specialist). Nobody here is saying that you have Parkinson's but you need to be seen by the appropriate specialist. Gardener has a point in you don't say how your symptoms developed. If they came on quickly and not over a long period of time, you should make an appointment with a specialist immediately because that might indicate something more serious than Parkinson's.

 

Dave

 

P.S. Some of us with PD have very little or no tremor. I'm 3 years into my diagnosis and have a light tremor in my right hand/arm and right leg. I'm what my doctor calls a rigid dominate version of Parkinson's. No two people with PD are alike, hence the reason they calls this a snowflake like disease.

 

I think I read that something like 1/4 of PD patients are rigidity dominant rather than tremor dominant.  My uncle (dad's BIL) had PD and to the day he died he never had any tremors.  So, lack of tremor does not mean you are free and clear of PD.

 

Of course, the bad news is that rigidity dominant PD is associated with greater degrees and earlier disability than tremor dominant PD.  

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Thanks to all who replied. Most of the symptoms have been going on at

least the past year - the tremor about 4 months now. The insomnia is

getting worse and the nighttime urinary issues have spread to daytime

urgency as well. My instability and dizziness has gotten more pronounced

in the past few months.

 

I will definitely talk to another doc and see if I can get a referral. Thanks to

all. At first I thought I was being overly paranoid, but the more I thought

about it the angrier I became. To say someone does not have something

when they didnt even bother to go over the list of symptoms is simply careless.

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While I agree with the others that seeing a neurologist or MDS is a good idea, in my opinion, you're description of your symptoms doesn't sound like PD.  For one thing, PD normally starts on one side, not both as you have described.  Also, PD symptoms normally come on relatively slowly - especially in younger people.  If you started having PD symptoms a year ago and you are already incontinent; can't move your fingers; and can't get out of your car - you might be setting a record for disease progression.  Also, you describe an increase in blood pressure and orthostatic hypotension, which would seem to me to be contradictory.  

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Patriot, the tremor is in my right hand and occasionally right foot. Have not had left side issues except for muscle spasms at night. Those hit right leg and foot, but have alternated to left side occasionally. My "facebook memories" today showed a post from 2013 that I complained about Leg cramps, hand tremors and hands tingling that kept me awake all night. I honestly have no memory of that episode. I get leg cramps overnight from time to time, but apparently this was very bad and painful. I do know my short term memory is shot, and yes I do have Alzheimer's on both sides of my family - my mother and her brother, and my dad's mother.

 

A response to someone I made on that post said I wish I knew what was causing it, but as far as I had researched, leg cramps and hand tremors can equal Parkinsons. I didn't get any medical treatment at the time because I had no insurance. I do now have insurance, and today called to find a neurologist who takes my plan. The one that does is booking out to late December already.

 

They do require a referral from a PCP so I called asking the PCP to consider writing a referral. I will see what happens. Thanks for everyone's help. :) It means a lot to have someone respond who has gone through similar situations. Parkinson's or not, I just want to find out what is wrong and get the symptoms under control.

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I think I read that something like 1/4 of PD patients are rigidity dominant rather than tremor dominant.  My uncle (dad's BIL) had PD and to the day he died he never had any tremors.  So, lack of tremor does not mean you are free and clear of PD.

 

Of course, the bad news is that rigidity dominant PD is associated with greater degrees and earlier disability than tremor dominant PD.  

 

 

I didn't know that about rigidity.  Where is this documented?  This doesn't sound good fro me.. 

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I didn't know that about rigidity.  Where is this documented?  This doesn't sound good fro me..

 

I've heard about this. The way I look at it, if I progress fast, then I progress fast. If it's slow all the better. As my PD stands right now, it's progressing slowly but it is noticeable.

 

Dave

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Murray - If you google non-tremor dominant Parkinson's vs tremor dominant you'll get quite a few research articles on progression rates.  I've done some research on this and studies have shown a faster progression for those who present with no tremor or tremor that is insignificant compared to other symptoms.  I'm not convinced about this and wonder if presenting with tremor provides a slower progression in the early stages but eventually we all reach advanced stages at about the same time.  I'm non-tremor dominant but five years from dx I have developed a right foot tremor but it is not always present at rest.  I feel that my progression has been typical (if there is such a thing).  Gardener

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Good post Gardner....

 

Your post would be interesting on "Ask the "Doctor"

 

I'd be interested in how he replies on the non tremor vs tremor progression.

 

D

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Definitely get a new primary doctor, and get to the MDS stat.  Your new primary can usually call the MDS to get you in earlier. squeeky wheel gets the grease.

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I think I read that something like 1/4 of PD patients are rigidity dominant rather than tremor dominant. My uncle (dad's BIL) had PD and to the day he died he never had any tremors. So, lack of tremor does not mean you are free and clear of PD.

 

Of course, the bad news is that rigidity dominant PD is associated with greater degrees and earlier disability than tremor dominant PD.

I haven't heard of this until now. My tremor is slight, so I'd say I'm definitely rigidity dominant. Maybe that's why, at my first MDS visit, he told me I might only be 2-3 years away from disability. Hmmm...

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While I agree with the others that seeing a neurologist or MDS is a good idea, in my opinion, you're description of your symptoms doesn't sound like PD. For one thing, PD normally starts on one side, not both as you have described. Also, PD symptoms normally come on relatively slowly - especially in younger people. If you started having PD symptoms a year ago and you are already incontinent; can't move your fingers; and can't get out of your car - you might be setting a record for disease progression. Also, you describe an increase in blood pressure and orthostatic hypotension, which would seem to me to be contradictory.

I have experienced OH, although not frequently; I thought I was just a little anemic since that's happened in the past. I have also seen an increase in blood pressure over the last couple of years, but I attributed it to long-standing weight gain. At my last MDS visit, BP had dropped a little. I thought it was because of the boxing, but MDS said it's probably due to starting Amantadine.

 

I understand that PD affects the autonomic nervous system, so it makes sense to me that you could experience both OH & hypertension.

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DaynaE,

 

You should be angry. It sounds like that doctor barely gave you the time of day; he should definitely be fired! Do what you have to do to see a specialist, even if it takes a while. It should be worth the wait, especially if you can get to an MDS. I hope you get that referral soon...GOOD LUCK!

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While you wait for a diagnosis, try out some Ashwaghnda from amazon or vitamin store. It can definitely help some these systems and might help to rule out PD if you don't have it. Even if you get diagnosed later, it still very good supplement for PD.

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Ashwaghnda...

 

First I've heard of it...

 

Are there many on the forum using it? If so any notable change in symptoms? I'm all for natural...

 

I'm on AZILECT and can't find a site that will tell me if its a safe combo?

 

Waruna01 what is your dosage?

 

D

Edited by Discovery

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there are few very safe herbs that are good supplements for PD or for general health. Ashwaghanda is adaptogen which means it works everywhere in your body where its needed. i dont know about combo effects with azilect but you can try it for few days to see if it helps or not. you normally feel its effects within days. 1500-2000mg per day is a good dose but it also depends on the brand. not many people seem to know about this wonderful herb which is used to treat parkinsons along with mucuna purines which is natural dopamine.Take it in the morning time as it can give you a too much of a boost that might keep you awake at night. authentic Shilajit, this is really hard to find in U.S, is also potent natural supplement for Parkinsons that can boost your energy levels. only legit shilajit in U.S seem to come from lotus blooing herbs. Tulsi Gotu Kola Tea is also wonderful to take every day. Its sweet, so you dont need added sugar for the tea.

Edited by waruna01
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I'm generally skeptical of pretty much all herbal supplements. Is there any real evidence of the efficacy of ashwaghanda? And mind you, the plural of anecdote is not data.

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theres hardly any evidence for efficiency of any herb or any natural ingredient for that matter let alone Ashwaghnda. You cant patent a herb so theres is no money to be made for big pharma to spend on clical trials. You cant sell a $12 bottle of Ashwaghnda at $500 like they do with azilect which they did hundreds of multi million dollar trials and still couldn't prove it slowed pd. All i know is this herb worked wonders for me within days of taking it. Will it slow PD? I don't know but i'm yet to find someone who had anything bad to say about it after trying it. I used to say If its good enough for Dr Rudy Tanzi to take, A famous Professor of Neurology at Harvard, it's definitely good enough for me. Just my two cents:)

 

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Vitamin C was pushed for a long time as a preventative for the common cold, among other purported health benefits.  My dad even got a Vitamin C bottle autographed by Linus Pauling (winner of Nobel Prize for both Chemistry and Peace).  Pauling was a huge advocate for Vitamin C supplements, both to fight the common cold and as a cancer treatment.  A number of trials testing the efficacy of Vitamin C were conducted with, at best, mixed results, and plenty of evidence that Vitamin C is no better than a placebo.  Most of current mainstream science still consider Pauling, contributions to the field of chemistry notwithstanding, a quack with respect to Vitamin C.  

 

So, given all that, I will take the endorsement of ashwaghanda by Dr Tanzi with a rather large grain of salt.

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