Was it difficult to find the right diagnosis?

[Mary Klein / John Klein]

My hyusband was noticing left-hand tremors for a couple of months before he brought it up to our doctor.  The doctor immediately said not to jump to any conclusions – that a tremor could have several causes.  He told him to come back in a few months.  My husband only lasted a couple more months before he went back to see him and asked for a referral to a Neurologist – it took six months before he got in.  In the meantime, I was convinced he had Parkinson’s based on his loss of smell, night dreams, tremor etc.  On our very first visit to the Neurologist, she asked him to walk and did a couple physical tests and promptly announced that he had Parkinson’s.  When we asked her how she was making her diagnosis, she replied that she had been in the field for 25 years and both her brother and her father have Parkinson’s – she lives amongst it.  We often wonder why our Family doctor didn’t just immediately refer to a Neurologist as any kind of tremor is abnormal and should be investigated.  Perhaps he thought he could delay the diagnosis.  I think it is often worse worrying about what it is than actually finding out so you can do something about it.

 

 

[Ally]

Hi Mary, thanks for sharing. I think your story illustrates how important it is to trust your gut and keep pushing for answers/help from medical professionals, even if they don’t think that anything is wrong. Your husband is the subject matter expert in his own and body and he knew something was off. As someone who spends a lot of time with him, you could tell, too. There is a saying “ignorance is bliss” but I don’t think that’s true when it comes to our health.

Now that you have a diagnosis, do you and your husband feel like you have at least a little more stability and/or control over the situation because now you have something concrete to deal with?

[J. Gottlob]

It took over a year to be diagnosed with PD.   My first symptom was my left heel dragging on the carpet at work.  I tried a different pair of shoes.  Same result.

So I went to the chiropractor, because my hip had gone out before and I thought maybe that was it.  After a couple months of adjustment, xrays and traction, I was still no better.  That doc suggested an MRI of my neck and to see a spinal surgeon.  Got the MRI and went to the surgeon.   I wasn’t impressed with him, so I scheduled an appointment with a neurosurgeon.

He examined me and said he thought it was in my head.  So I had a brain MRI with reflection and no issues were found.  He referred me to another neurologist and this doc did a EMG test on my whole body and didn’t see anything majorly wrong.   He thought maybe I had a stroke.  The PD was only affecting my left side – leg/arm/hand, but no tremor.

So my PCP had one patient who was having strokes due to a heart condition, which 18% of the population does.    He referred me to a cardiologist, who did a echocardiogram, both external and down the throat.  Result – yes  the flap between the two top chambers of my heart isn’t sealed, but he didn’t think that was the issue.  The brain MRI would has showed if I had a stroke or not….They also checked the arteries in my neck for blockage, which there wasn’t any.

So at this point, now what?    I had MRIs from my brain to my butt, no conclusion.  Met with multiple doctors, no conclusion.  But after several months, I developed a tremor in my left pinky.

My PCP referred me to another neurologist who told me that he knew by looking at me when he first met me that I have PD.  The stone face and non-blinking were  his first clues, all backed by his testing.

So it isn’t always quick.

 

[Mary Klein / John Klein]

Hi Ally,

Yes, once we had a confirmation of the diagnosis, we could at least do some further research into what we could do on a personal level.  One of the first things we discovered on-line was the recommendation to join a Rock Steady Boxing group.  Fortunately for us, there is a group about a half an hour from us.  This form of exercise has been proven to have certain neuro-protective benefits .  Their website is a good starting point if you are unfamiliar with this.  John attends three times a week and actually finds physical benefit but also emotional benefit as everyone attending suffers from varying degrees of Parkinson’s with different symptoms.  They often bounce things off each other and he finds this helpful.  We are also finding this site to be extremely helpful and are so happy we came across it.  He is still not on any medication yet so it is interesting to read some of the comments here regarding medications.

Also, now that we have a ‘diagnosis’, it is easier to explain to others why they might be witnessing slower movements etc.  We are finding that very few people have a lot of knowledge about Parkinson’s.  We have found ourselves having to tell them that Parkinson’s’ is ‘not a death sentence but it is a life sentence’ if that makes sense.  Most are unaware that patients can often go for years without their symptoms becoming debilitating – and that it is a ‘designer’ disease wherein no two people have the exact same symptoamology  or progression.  Once friends and family become aware of a couple of these facts, they tend to be a little calmer regarding the diagnosis.  We have also decided that we will not live worrying about the future or any specific symptoms that may or may not occur – we have to live for today and enjoy what we have always enjoyed.

 

 

[DAR DAR]

It took us a few months to figure out that my husband had it.  Initially, we thought he had injured his neck or shoulder.  But a shoulder MRI and EMG were normal.  So we went on our way, but then my husband started having tremors in his left arm and I noticed he wasn’t moving his left arm when he walked and was shuffling his feet.  A neck MRI and then a brain MRI came back normal.  We received our first PD diagnosis.  But the only way we were ‘sure’ it was PD was through a DATscan.  Took a month to get scheduled for one, but had the results in one day.  We are glad to know what is causing his issues, but now we feel a bit overwhelmed with trying to read about PD and figure out the best steps to take.  We’ve been told that the most important thing is exercise.  So he exercises daily.  But wondering about the medicine he is on and what changes he needs to his diet . . .

[Mary Klein / John Klein]

We are somewhat surprised that Family Physicians don’t seem to be aware of some of the well-known symptoms associated with Parkinson’s (loss of smell, sleep disorders included) that can be powerful clues and that they seemingly aren’t trained to make an assessment based on gait etc.  Your Neurologist and ours knew within a couple of minutes just through observation.  Once we pushed our Family Doctor to make a referral to a Neurologist, it still took about 6 months to be seen.  Thank goodness we weren’t sent all over like some are before finally landing in a Neurologist’s office.

[Mary Klein / John Klein]

Try and find a Rock Steady Boxing group in your area – it is wonderful for the exercise component and also for the comraderie.  We are finding that you have to be pro-active and do some of your own research -as long as our sources are credible.