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Claire

Questions for next Neuro visit

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Maybe someone has a helpful suggestion of things to look out for or questions to next ask my neurologist?? I’m a 38 year old mom who has been completely healthy my whole life. With the birth of my triplets 5 years ago I started to struggle with shoulder pain and limited movement in my left arm. My Physio wrote it off to the fact I was juggling 3 infants constantly and whenever he worked on me -it improved. Fast forward 5 years. I’ve struggled with back pain. Lower and upper. And again just written it off to damage from my unusual pregnancy. About 9 months ago I started with body aches. Deep aches that felt like it was in my bones. Not constant. But on and off. Cramps in my foot. And general unsteadiness. I’ve had what seems like every blood test under the sun. And nothing is abnormal. The tremors started about 3 or 4 weeks after the pain but because I was on a variety of meds that the Neuro prescribed for the pain, I wrote it off to a meds reaction. My Neuro wrote it off to anxiety 😡. I went to a second Neuro and she too mentioned how strange it was that my muscles shook when she did all the various tests but said perhaps I was nervous?? I’ve had an mri which was normal. I’ve never considered asking about Parkinson’s because I presented with pain first. And tremors seem to be postural rather than resting. Although if I overexert myself (like climbing stairs) my heart starts to pound and I’ll will have shaking in my left arm and fingers. My left arm muscle is constantly in pain as well as my fingers. I assume from the tremor. And I constantly have a twitch under my right eye. I have another Neuro appointment 26 March and I need to know what to ask. How to phrase My questions. I don’t want to seem like the patient who is looking for a serious diagnosis but I don’t want someone to tell me I’m anxious again.

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Dear Claire,

I would suggest before you go any further that you submit your case to  Dr OKUN in the forum Ask the Doctor on this site.  Dr Okun is a Movement Disorder Specialist who could point to you which aspects  in your history could confirm or exclude Parkinson's.  So many doctors, even neurologists I understand, do not take Parkinson's into consideration when dealing with a young person.  I was lucky enough to be diagnosed by someone who understood at the very first appointment that I was probably a "juvenile Parkinson's". I was 34 at the time. Dr OKUN  is a very knowledgeable Doc  with a worlwide reputation.  He is highly devoted to the Parkinson's community. If he thinks Parkinson's is a possiqbility, then If possible,  go to a Movement Disorder Specialist and ask if it is indeed the case.

Good luck,

Mireille 

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hI cLAIRE

SO SORRY YOUR HAVING SO MUCH ON TOP OF RAISING A YOUNG FAMILY.iF YOU ARE CONSIDERING pd.The big thing with PD that is almost universal in loss of smell as a early sign.

As far as doctors writing you off with anxiety this is also very common ,young doctors are actually taught to do this which a difficult case is presented.I would get a good primary who can help you sortout your problems.

best

john

Edited by johnny

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A few things, though asking Dr Okun is also a great idea.

 

The eyelid thing is unlikely to be PD related, or at least that's what my MDS said about my eyelid fluttering.  Postural rather than resting tremors needs maybe a bit more of an explanation but sounds like it is not typical for PD.  The heart pounding and shaking after exertion sounds more like a cardio fitness issue (the shaking in this case could be what's called enhanced physiologic tremor - something everyone is subject to with over-exertion).  

 

As to how to ask questions, I'd start by presenting everything without regard to how important you think a given issue might be and without any worries that they might mean PD or any other neurological condition.   Phrase any specific questions in ways that show you want the correct answer, not just any answer.  E.g. "Why is this symptom more consistent with condition X than Y?"   

 

Hope that helps.

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