Chiari VS Parkinson's symptoms, which is it?

[HeatherLynn2013]

Ok this one goes out to anyone experiencing interchangeable symptoms of Chiari and Parkinson's.  Please reply if you would, as I am hoping to find fellow members who are having this dilemma.  <3  Heather

[Jm_smalformedbrain]

I have been having a new muscle "seizure" or "spasm" whatever they want to call them. One doctor called them fasciculations. Nonetheless, I have been having one that now stays in my right index finger and causes it to continually spasm when I do certain things. It totally creeps me out. I can reach for something and it starts twitching all over the place and I can't stop it one bit. I take Dilantin for this. I tried to stop taking it....I know I know...I shouldn't have, but with surgery coming up I wanted to see if maybe the surgery fixed all of the "seizures"...well, after two weeks of tapering off, it proved disastrous. I convulsed literally for hours one night while awake and sleeping. It's so weird. My muscles just twitch, spasm, and move all over when I'm not on the medicine. It drives me nuts .

[HeatherLynn2013]

I am glad to know it could be something else besides Parkinson's Disease because I don't do well with Sinemet (which is the main med. they prescribe for PD).  It makes me feel sick after a couple of days of taking it.  Besides it doesn't seem to help all that much.  

I wouldn't be surprised if it turned out to be EDS, the CCI symptom list does describe a lot of what I am going through.  I am so glad you mentioned this especially the part about the dura patch issue with surgery.

Thank you Selma!!

[selmaS]

  I didn't think I fit EDS either , but if CCI fits, it is a good chance u have EDS as well as it is one of the reasons so many have CCI.

Could be the Dr u saw b4 this one was not a specialist and why the difference in the measurement??

LOL...I think we all have a movement disorder....when I think about how I move at times...especially at night after I have been in bed a while and need to get up to use the restroom....goodness I walk like I have CP or something it is such a chore....for me it is only during a flare or at night....very odd but it seems much of these symptoms are.

I hope u get EDS ruled out, b4 u cross it off the list....I decided I did not have it, but my NS told me I did...good thing too as those with it need to have their dura patch made from their own tissues so they do not reject it  and develop an infection and leaks....

LOL...I am picturing u walking to the music I have on now...   : )

[HeatherLynn2013]

Oh and by the way, I do look like a bobble head.  lol  I've used that term myself to describe what I look like.  I've even gone so far as to step to the beat of music to time it with my head bobbling to make it look like I am dancing while I am walking, just to lighten the mood in the room.  It always brings a smile!  We can all use more of those!  

[HeatherLynn2013]

I've had MRI's of the cervical spine and the brain.  Also a CSF flow study.  I'm thinking I need an MRI of the entire spine, as a lot of my problems are triggered by bending at the hips.  

A syrinx does describe a lot of my symptoms including the numbness in my limbs (almost a partial paralysis). Is it possible for the syrinx to be located further down the spine?  I also have several bulging discs in my cervical spine.  That could be part of the problem as well. .

My Neurosurgeon is a Chiari Specialist.  This new neurologist is a movement disorder specialist. If you saw me, you would definitely know why as it is obvious that I have a movement disorder.  

I just read up on Ehlers-Danlos again and also CCI.  I do see a lot of similarities with the CCI, not so much with the Ehlers-Danlos.  It sure is a mystery with the multiple symptoms happening.  I pray they figure it out soon!  

[selmaS]

  Hi...I know unless u see a true Chiari specialist they all seem to use a different form of reference to measure....and it is possible to have a few MRI's and told it is longer  then the last MRI or shorter as they  also can be looking at different slices...and all in all it is the same size, just looking at a diff angle can change the appearance.

The biggest problem is Chiari is not something studies closely in Med School and as a blurp on a day that is filled with more impressive issues, as many Drs do not feel Chiari is a significant finding.

Luckily we do have  a few NS's that  have done research in the field of Chiari and related conditions like syringomyelia, tethered cord, ehlers-danlos , ICP, POTS, sleep apnea that we are learning more.

Many articles on line say Chiari is rare, but that is not true as more have Chiari then have MS....it is just not well known/

The neck and middle back are typical pain issues for those with Chiari....since laying down helps I would wonder if u have CCI as well it is an instability that causes u to be a bobble head....this can cause pain all over and feel better laying down as ur body is not using all it's strength to hold u up and together. Look into Ehlers-Danlos and CCI.

  May I ask what other tests have u had till now? MRI's of what areas? Brain is obvious....???I ask bcuz a syrinx can also cause some of what u describe too.

[HeatherLynn2013]

Oh how I wish we could edit these posts!  I wanted to clarify the CM herniation issue.  My first Neurologist told me it was 5mm, my actual MRI report showed 9mm and when I saw the Neurosurgeon she said it is actually 18mm's!!  Unreal how the perception changes among professionals.  Although the NS showed me how to draw a line across and that is how she measures the herniation.  I guess it's all about how you look at it? To me it should be across the board, not a matter of opinion.  But, I am no doctor. :)

[HeatherLynn2013]

Also, my neck and middle upper back between shoulder blades absolutely kill me at times.  And I wanted to mention that laying down horizontally seems to REALLY help to ease my symptoms.  No meds that I have tried do much good at all.  I pray for a miracle to happen!  A healing would be nice!!  :)

[HeatherLynn2013]

I do feel your pain.  You must be anxious to find out what is going on.  
I read that you have aches in your triceps and hyperflexia in your legs, just wondering if you have any stiffness too? The tremor itself doesn't make me think it's Parkinson's, but with the other symptoms it could be.  There are a number of things it could be, I am no doctor!  :)  Just another person trying to figure out what the heck is going on with our bodies.  :)
I replied to SelmaS too, if you care to read about my symptoms.  It may be of some help to someone else by reading my story.  That is my intention.  I plan to report back here when they figure out my diagnosis so maybe someone else with similar issues can get the help they need.  :)

[HeatherLynn2013]

My symptoms are:  I can barely walk, my steps are baby steps when I do, when rising from a seated position I have to force the motion while trembling all the while, When I bend over at the hips it's also a forced motion, my first few steps are hard to maneuver, my gait is wobbly and feels like my balance is off, my legs feel almost all numb and stiff and my muscles twitch and cramp and ache at times but are always weak, feels like I have weights on my legs when stepping, my arms also twitch and cramp and ache and are weak just like my legs, my shoulders lock up when extending it out of a small range of motion, my head and trunk and legs and arms tremor, my feet and hands are also affected just like my legs and arms.  I also have a high pitch noise in my head, dizziness, my ears feel full and a headache in the back of my head while straining.  The symptoms all get worse when I do any activity other than walking to the bathroom or to the kitchen at home.  The symptoms are bearable when I don't do much, the days I take a shower and have to dress myself (like today) set me into a bad episode.  
I have an 18mm CM, but my NS said there is another underlying problem, possibly Parkinson's.  Going to a new Neurologist, referred by my NS, to hopefully get a diagnosis.  This has been a progressive problem for me as it started in June 2013 with stiff joints and fatigue and here I am today almost unable to walk.  Scary to say the least, but hopeful to have some help to ease this misery.

[hevnw8s]

I do as well. I have slight tremors in my left thumb, ring finger and hand. I also have tongue tremors. My upper left tricep aches a lot and I have hyperflexia  in my legs. They actually haven't ruled out another disease such as ALS or Parkinson's. I have more testing and meet with a specialist in Motor Neuron Diseases April 15th.

[selmaS]

  Hi...can u be more specific as to what symptoms of Parkinson's u have?

I do get tremors in my arms and hands, but I was informed mine is due to a EDS DX.

Just wondering what issues u r having.