still do dx, but they are starting me on some meds

[4happygnomes]

I saw a movement disorder specialist last Friday at the Mayo as a prerequisite to enrollment in their very long waiting list for their PT program to help with my "functional gait disorder".  The Neuro said "I honestly don't know what is wrong with you"...and isn't 100% sold on the referring Neuro's diagnosis that this is "functional" because of how I present.

He is putting me on meds that they give Parkinson's patients to see if that helps with the extra tightening/reflex I seem to do with my left leg and to address the slight ankle dystonia he observed.  It's grasping at straws because I also have sensory symptoms that Parkinson's patients do not have.  

The saga continues....so very exhausted from being in this body!  =(

Karen

[kwarendorf]

Hi Karen -

Mayo gets a lot Medical Celebrity attention. From what I've read here and elsewhere they can be very difficult to deal with if you don't fit nicely into one of their slots. I might look elsewhere...

Just one man's opinion.

Kyle

[HVAC]

I don't buy it. It is not unusual to have some other specialist come up with a different diagnosis which is not right.

Alex

[Joiedecour]

that's weird, Karen. I think I would be wary of the Parkinson's drug. You would think that you'd have a "suspected Parkinson's" dx before starting the drug rather than a functional dx. It doesn't add up. Good luck with everything. Do you ever have any relief from your sx or are they constant? That, too, might be a clue.

[4happygnomes]

Thanks for your replies...yes, I don't "fit" in the Parkinson's box at all and I haven't started the meds yet (yes, Levodopa is the rx prescribed)...one of the potential side effects is dizziness, and we've got a lot going on this week so can't afford to be anymore dizzy or off balance than I already am.  Being symptomatic sure does interfere with Life!

I I told my PT about the Neuro's thoughts and she is just as perplexed...

This Neuro finally made note of something I've been mentioning at every other appt...on my left foot, the symptomatic leg...when I walk, my toes flail or spread apart...I've never had a positive babinski reflex...but wonder, if  that is what this is and presenting itself only when I walk.


And he also made note that my eyelids flutter rapidly/uncontrollably when I close my eyes.  Two oddities I did not have prior to the initial fall in May.  

What is alarming to me is that this Movement Disorder specialist said that they are diagnosing  about 10 people with this "functional gait disorder" a week!  Would love to know the follow up of these patients and how many end up with a real tangible diagnosis!  

Thanks as always for your input!

Karen

[supermum_ms]

Parkinson's?!

I am aware that Dystonia is associated with Parkinson's but there's something like 50 other primary and secondary medical explanations, that are also associated with Dystonia. Hmmmm I'm even wondering why he's saying it's specifically "slight ankle Dystonia" and not any of the alternatives eg clonus etc. I honestly can't come up with anything specific that you've ever mentioned that might indicate something like Parkinson's 'could be' going on.

Did you know that "when Dystonia effects the foot in isolation, it is rarely on a primary basis but more commonly arises secondary to a number of conditions..." ( googlebooks - uncommon causes of movement disorders edited by Néstor Gálvez-Jiménez, Paul Tuite)

Sometimes when Parkinson's is suspected, a doctor will prescribe things like L-dopa "Levodopa will not arrest the progression of Parkinson's but will reduce the symptoms of stiffness and slowness." http://www.parkinsons.org.au/about-ps/medication.htm

BUT this is also coming from Mayo, right? I genuinely don't think it would be in your best interest, to inadvertently allow any more anecdotal evidence to be gathering by any area of Mayo, because it could potentially be used to further Mayo's "functional gait disorder" idea, if (for what ever reason) you don't happen to benefit from this medication!

I kinda think you'd probably be better getting neutral opinions eg physiotherapist than relying on any additional Mayo areas, to be unbiased by the functional idea that's already in your file etc. As i said to someone the other day, once bitten twice shy and all....

Cheers..........JJ

btw this link is a very respectful, neuro based site regarding functional disorders which is very interesting and may help to understand how your functional gait disorder may have come about, and i think it also could aid in disproving it.
http://www.neurosymptoms.org/#/movement-disorders/4533053142

[HVAC]

It is good you are getting on drugs for symptom management. If it is MS it won't mask it. Many people wait to take medication for symptoms until they are diagnosed. I was not offered any. I suffered needlessly for years. Most of us have the same drugs before diagnosis and after. The DMDs are the only difference.

I know it is frustrating not having a diagnosis. We want to know what is wrong and we want to be validated so friends and coworkers and sometimes family knows what is going on is real. Sometimes we even start doubting ourselves.

I sounds like the doctor is trying to get some answers. The problem with the human body is unlike cars each one is different. There is not a manual for each make and model. I am amazed at how complicated it is. I heard a talk on the radio which said there is an extraordinary amount of nerves in the size of a pencil eraser in our brain. I can't remember the number but it was mind blowing. They know so little about the brain.

Wishing you get your answer soon.

Alex

[davincidanes]

LOL!  

[4happygnomes]

Thank you, I guess I'm not sure what I'm hoping for...if it works, I guess I have parkinson's??!!  (which honestly doesn't match up)  

And if it doesn't per the Neuro's notes..."If ineffective, I feel we will have exhausted all treatment options for her".  So, just pushed out of the boat and sink or swim on my own??!!  Better start practicing my doggie paddle...yikes!  =0  

[davincidanes]

Well, that is something at least.  I hope you find answers soon, as do I for myself.  Just my last visit with my general neuro, she prescribed Baclofen for the stiffness and spasticity in my legs... worse on the left than it is on the right.  It does help a little.

Wishing you the best of luck.

~Linda

[aspen2]

... and the mystery deepens, and I so completely get where you are coming from (as you know!).

It will be interesting to see if the med helps.  Don't you feel like a walking experiment at this point?  Argh.

Hope something about this new therapy provides more information ... thinking about you ((hugs)).