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Lorit249

Scared, confused, in pain - young onset

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Hi all,

I had a tremor in my right pinky for over a year.  Finally went to doc in September who said it was an essential tremor.  I also had pain in neck and he sent me for PT and chiropractor.  By November i was in terrible pain in neck,weakness in shoulder (MRI showed rotator cuff inflammation), and shaking all over including little spasm in my right toes. Doc said it was nerves and prescribed Zoloft.  In March had a death in the family and neck and right leg seized up- thought that tremor was spreading to leg.  Finally called a neurogolist who examined me and diagnosed Parkinsonism.  I was. Floored as my primary said it's definitely not PD.  Why do I have an essential tremor? Is that normal? Any other woman experience neck pain? What helped? Finally what can I expect from meds?  Improvement or just keeping what I have.

I have three kids late teento adult and I am terrified to tell them.

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Hi, Lorit249:

You might check with the Ask the Doctor thread about this.  I'm sorry you are going through all those symptoms and can surely understand your concern.

Often, general neurologists are not familiar with a lot about Parkinson's Disease.  You might benefit by taking the step to see a Movement Disorders Doctor (MDS) in a neurology department within a university-associated hospital. 

Will pray for you right now that you find an MDS who can give you a follow-up for a more definitive answer and some help with your symptoms.

Keep us updated, and take care.

Linda

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Thanks Linda I think I saw an MDS. She ordered an MRI to rule out other things. No appt for that yet and I see her again in June. A friends husband has PD and she contacted the Parkinson's foundation for a doc. I see him in May. In the meantime I'll keep exercising and praying. Thank you for your kindness

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I think most doctors probably say essential tremor initially because it is more prevalent than PD, especially for young onset patients. I was pretty open with my family during the whole diagnosis period. I personally believe that knowledge is the best coping mechanism. 

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Hi, wish you weren't here for me to meet, but glad you found us.

I second what Linda said about posting on the dr fourm and making sure your seeing an MDS. Also second what she has to says about prayer, I hope you get things sorted out soon

I also second what Swva said, particularly since it was your primary who said it. Primaries spend med school studying horses not zebras. I was diagnosed with at least half a dozen different things before Parkinsonism was even on the radar. It sounds like you have at least one other medical condition which makes diagnosis harder.

Deep breaths, calm thoughts, try to get some rest (says the hypocrite posting at midnight)

 

Hang in there

- Feisty

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I agree with all of the above. Get a good MDS. Make a list of questions. 

I had 3 months of medical limbo before I had a DAT scan to confirm my DX. 

You will be ok ether way. Just take it one day at a time. I saw a psychologist to help me. She taught me breathing exercises and just let me cry if I needed it and set me straight when I needed it too!

good luck and glad you found this forum!

 

LAD

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On ‎4‎/‎22‎/‎2017 at 10:55 AM, Lorit249 said:

Hi all,

I had a tremor in my right pinky for over a year.  Finally went to doc in September who said it was an essential tremor.  I also had pain in neck and he sent me for PT and chiropractor.  By November i was in terrible pain in neck,weakness in shoulder (MRI showed rotator cuff inflammation), and shaking all over including little spasm in my right toes. Doc said it was nerves and prescribed Zoloft.  In March had a death in the family and neck and right leg seized up- thought that tremor was spreading to leg.  Finally called a neurogolist who examined me and diagnosed Parkinsonism.  I was. Floored as my primary said it's definitely not PD.  Why do I have an essential tremor? Is that normal? Any other woman experience neck pain? What helped? Finally what can I expect from meds?  Improvement or just keeping what I have.

I have three kids late teento adult and I am terrified to tell them.

My PD progressed somewhat like this...it exasperated my spine's weak spots.  Stress then got in the mix and brought me down even further.  I was getting to where I had trouble walking.  At first, my left hand would have postural tremors and left arm would be stiff. Then, my left foot would cramp.  Then, my neck would be stiff.   Then my lower back and stooped posture; which increased my back pain beyond what it should be.   I got to where it even hurt to drive very long because I was fighting the stiffness so much.  I was still misdiagnosed at this obvious stage, and I had been misdiagnosed before by focusing on my back; which was not the real problem.   Finally, I saw a Neurologist recommended by a friend of my wife's who has MS.  He immediately diagnosed me with parkinsonism and ordered a DatScan to be sure (because of my younger age).  The DatScan confirmed it for everyone, there was no doubt then. Plus, I was immediately responding to medication.   Now, I get around pretty well and I am not too real stiff without much tremor.   Some days PD really tries to fight back and reminds me it is a struggle.  I have 4 kids, one is an adult.   Youngest is 10 now.   So, I have to admit, I am fairly tired at the end of the day; but that varies.   I take advantage of the energy and mobility I have been given back and work through it.   Your kids probably already noticed more than you think they have.  I know mine did.

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On 2017-04-22 at 11:55 AM, Lorit249 said:

Hi all,

I had a tremor in my right pinky for over a year.  Finally went to doc in September who said it was an essential tremor.  I also had pain in neck and he sent me for PT and chiropractor.  By November i was in terrible pain in neck,weakness in shoulder (MRI showed rotator cuff inflammation), and shaking all over including little spasm in my right toes. Doc said it was nerves and prescribed Zoloft.  In March had a death in the family and neck and right leg seized up- thought that tremor was spreading to leg.  Finally called a neurogolist who examined me and diagnosed Parkinsonism.  I was. Floored as my primary said it's definitely not PD.  Why do I have an essential tremor? Is that normal? Any other woman experience neck pain? What helped? Finally what can I expect from meds?  Improvement or just keeping what I have.

I have three kids late teento adult and I am terrified to tell them.

 

My father also had essential tremor and YOPD - you can have both together unfortunately enough. And this is not the first time I have heard about the two coming on together at the same time and prior having the doctor's thinking it's "just essential tremor" and nothing more. I am sorry for your situation.

We have talked a lot more about his symptoms and what he experienced before bring diagnosed in his late 20's and he also had a lot of joint pain too and panic attacks (which doctors wrote off as the stress of "becoming a new dad"). Your G.P didn't notice because YOPD in young person is never expected, some times presents differently and comes across as something else.

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I know that they know something is up - hard not to but waiting for daughter out of state to come home to tell them all at the same time.  Thanks for the responses

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