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Melissab

Worth it to pursue this?

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I am 38 years old and for the last year have been dealing with mystery symptoms that seemed unrelated and took me down the path of being tested for MS (all MRIs and lumbar negative), all forms of food allergies, etc. my symptoms a year ago that initially lead me to a neurologist were some tingling in my right hand and arm, fogfiness, and insomnia. Over time, other symptoms that I had at the same time began to over ride those original concerns while the arm tingling went away (and now I wonder if that wasn't just purely coincidental). Here's what is going on now:

Left hand tremor that I've had for years and only occurred very rarely is now daily. Not all day, but definitely daily. It's always at rest and my hand wants to form a "c" in which the tremor is a pill rolling action. 

Clinically diagnosed with IBS constipation variety by a GI who now wants colonoscopy and upper scope.

I'm an avid runner and have had great difficulty getting going now. My shoulders feel so rigid especially in the morning that I often can't run. I did mention last year to neuro that sometimes my feet just don't seem to want to move at the speed they should, but I can't say anyone has noticed this beyond me.

Typing is harder. My left hand sometimes doesn't move fast enough to catch what I'm trying to do and then I have typos. Not always, but often.

I'm catching myself blankly staring into space especially if no one is talking to me. If I'm not having a conversation I blink maybe 3 times a minute.

My sleep is awful. I wake up about 4 hours into going to sleep wide awake and can't go back to sleep. Or I kick and wake myself up. I'm so sleepy during the day I can hardly stand it. I'm in a professional job where I can't be off the mark.

I've had left arm shoulder pain. No reason or injury. This is off and on for several months. Sometimes wakes me.

I've had noticeable reducement in my left arm swing. It isn't like it doesn't move at all, but less. And if I think about it, I can make it swing.

I've always had very low bp. Everyone chalks it up to being a runner and no one has ever thought it strange that I've gotten increasingly dizzy upon standing.

The other thing I did mention to neuro but we never discussed was that my foot arch cramps (more easily on left but sometimes on right) with my little toes curling painfully under and my big toe pointing up. This usually happens if I move my foot a certain way (exercising often does it). Very painful.

Newest are these quick, painless muscle contractions I'm getting in my legs and arms. People can actually see my limbs jerk and it occurs a lot. I haven't read anything to find this related to PD though?

So here's the issue. My neuro (MS speciality) is seeing me in a few weeks but I'm certain he'll think I have this all in my head. I once asked about PD and he said without further discussion that it wasn't likely. I've made a separate appt with a Movement disorder doctor at Northwestern but that's after the other appt and it's three hours from my home. I do t want to go that far to be told I'm making this up, that my symptoms dont match up, that it's functional. I'm just looking for your opinion if I should pursue this or if that's likely what I'll be told.

Thanks so much for any help!

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PD is definitely a possibility and you may want to see a PD specialist and see if a medication trial or DAT scan is needed.  Rarely does an expert need a DAT scan to make a diagnosis.

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Quick update and more guidance appreciated. I saw the MS neuro today and almost immediately he seemed put off that I was asking about Parkinson's. I wrote down all my symptoms and when they started, frequency, and whether they were present when I first saw him. He looked at the list and asked if I'd read up on Parkinson's and for how long I'd been doing so. Pretty apparent to me that he was leaning toward this being in my head before he assessed me.

He ran me through a battery of tests. He saw the tremor and I know I had a blank stare though he didn't mention it. I'm tired today. He was curious about my acting out dreams but other than that not impressed. He did not ask about my foot cramps or dizziness or dry eyes. No questions about slowness. When I walked for him he said my gait was fine (but I haven't had problems there) and he commented that my tremor wasn't present when I walked and that it normally would be if it were Parkinson's. Truth be told, I could hear them discussing this and I froze up with embarrassment. Today when I was walking with my husband I had a very noticeable tremor in my hand. I told him people had commented on my lack of arm swing which he said he saw but it wasn't extreme.

in the end, he said the symptoms I told him of were consistent with Parkinson's but he didn't feel much rigidity (isn't that a separate category from bradykenesia? I personally could see that my left hand had stop start patterns with the finger taps. The limb twitching he said was not related nor are the two episodes of sleep paralysis (which I know but thought I should mention anyway). He said he wouldn't put me on levadopa but that I could see a specialist (which I do have an appointment for three hours from home). 

I left with another script for a MRI which I don't want and the same feeling I always get which is that I am crazy. So based on what he said should I just stop? I don't want to waste people's time. I'm tired of taking off work for appointments with no answers. I'm beginning to think I am indeed crazy.

I took a video of my hand during my walk and am considering sending it to him and also letting him know that I didn't appreciate being talked about like a science experiment/child who was making things up. I should have advocated more during the appointment and I'm mad about that.  I want to insist on a l-dopa trial before an MRI...is that too much to ask?

Edited by Melissab

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I would not get discouraged but would recommend before doing anything else going to the other specialist right away.

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Thank you so much! Can I post a few very short clips for you to weigh in?

This one is my foot cramping:

This is my daily tremor:

 

This is while walking:

 

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There are some features here that could be Parkinson related and I would definitely get a second opinion.  The tremor is not classic, but it is more on one side of your body and worsens and becomes more continuous when you walk.  Best to see a movement disorders doc and get a full history and exam.

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