very interesting...and a case for videotaping

[pennst8r]

Those who read my update on my neuro appt (under my post to Moki re our appts same day) you saw I was given a  tentative Dx of paroxysmal dyskinesia dystonia. I was concerned as it is a childhood condition and didn't seem to fit me. Did some more "research" and found it can manifest in adulthood. The very interesting part is that it can also occur with MS!! Not that I feel this is the case, but just found it interesting. Did also find more similarities to me as well. This is a condition I had never heard of, so I thought that maby of you may not have either.

For this appt my husband videotaped a sampling of my spasms, which I took camera and all to my appt. This really sealed the deal with my being taken seriously and steps toward treatment and accurate dx being more aggressively pursued. For all my spasm buddies - this was a great help to the doc and really helped "prove" the nature of my problemms - I know we shouldn'y have to feel we are proving anything. However, as many of you know, many neuros don't take you seriously based on your word about your spasms and myoclonus.  

Anyway, just a couple thoughts. Have a happy Halloween!

Penn

[pennst8r]

Yes, I have had some awful treatment by neuros over the past 2 years. Once this is all sorted out, it will be tempting to contact them re what a disservice they did to me and their field. After suffering for 2 years with no one even acknowledging there was a problem (except my trusty PCP), I am feeling somewhat vindicated. Definitely will need to push for some resolution on the other symptoms once we get the spasms under control.

Wow, the info you found is extremely intriguing! We may get to the bottom of this someday afterall! I had never heard of this condition either - had to have her repeat it a few times just so I'd remember for my update. Thanks so much for the additional info!

BTW - my glucose is finally coming down under 200! Progress all over the place! When my vision returns, I can go back to work.

Penn

[Quixotic1]

I just read the stuff on PDD on the site WeMove.org.  Very good.  Your situation of being a woman, well into her adult years, with no family history of PDD, really does make me think that this might be a secondary case of it - and the most likely candidate would, indeed, be MS.  I read three different sites and unless you have had a serious head injury or have a CNS infection, MS is the likely culprit.

When it got to the "pathophysiology" of it - the what is actually going wrong at a cellular level - there is the suggestion that it is an abnormality of cellular function of "ion channels."  I won't pretend that I understand the implication of this, but about a month ago I was reading about the discovery that in MS, there is an early disruption of the proper sodium channel function, which then leads to a disruption of the calcium channel function.  Related?  I can't know.....don't understand the stuff.

I'm so pleased that some sense is being made of what you have been going through.  I can see why no prior doctor has put this together.  Haven't you been the brunt of some serious mistreatment by neurologists?  

Can't wait to see where this leads.

Q

[Quixotic1]

Wow!  This is definitely interesting.  I have never heard of that disorder, in children or adults.  And, it can occur along with MS - which I've always been convinced you have except, like "Zilla didn't understand the wanky dystonic dyskinesias.  We have talked about dyskinesias before, yes?

I agree.  this is a great place to start.  Lets's see if they can bring this under control and then you can bring up "What about the other stuff that is driving me perfectly mad?"

To all, for over a year I have been encouraging all of you to video record all of your visible weirdnessess.  We see here that it really paid off bigtime;  odd movements, nystagmus, gait problems, spasms - anything that is visible to other people can be captured.

If your speech becomes different - record it.  If your breathing is irregular when you sleep have someone record it.  Doint these things allows the doc to see and hear things that might not appear during a visit.

Good job!  Now I have to go read about it.

Q

[pennst8r]

Jo - yes, there are several symptoms not covered by the new dx. It does not cover my buzzing feet, cell phone vibration in my shoulder, wet spots, "branding" on my face, heat intolerance, walking/talking like I'm drunk, and on and on. But I guess its somewhere to start. The spasms are certainly the most bothersome symptom, though the heat intolerance is right up there too.

Doni - I'm not leaving the forum! This is not a definite dx, and I don't want Quix to have to send the enforcers out to drag me back, lol!

Z - you're right; I'm not that impressed - neither is the doc, but it's a start. It does not explain many, many of my weird symptoms (see reply to Jo). PDD does occur comorbidly with other condition, including MS - another reason I won't be leaving the forum. I went through the plan "for now" in my update on the good luck to Moki appt thread (our appts were same day). you are a super sleuth, lol! Doubling the baclofen for now, then may need to go to another, rather undesirable med (dreadful side effects). I am very happy though to be finally getting some action.

Thanks Ladies for your support, as always

Penn

[Momzilla]

Hey!

It is awesome that you've got an answer that seems to make sense of some of what you've been going through.  I have to say that the spasms you have always described are WAY out there compared to what others go through with their spasticity due to MS.

However.....And this is a very big, squishy BUT (just like mine), it leaves me wanting more, just like an expensive dinner at a really hip restaurant.  I get the impression it doesn't quite answer all your questions, either, Penn.

I mean, there's the spasm thing, but you've got other issues that aren't explained by this PDD, right?  I've known you a long time, my friend, through all of the chairs that have tried to eat you, and it looks like PDD is just episodic, or paroxysmal, as they say... in between episodes, the patient is neurologically just dandy.  That's just never been so with you.

I don't mean to rain on your parade, because this PDD DOES sound like you, especially if the doc looked at DH's video.  But it also makes sense to me that PDD can be comorbid or go hand in hand with other neuro conditions/diseases.  I think that lingers in your mind, too, GF (Girlfriend).

Will this doc follow-up with you?  Did he prescribe treatment?  Has he ever considered MS?  Perhaps this is why all this has been so complicated to diagnose...

Zilla*
P.I.*

[doni54]

After waiting so long for your dx, you have to be feeling quite happy.  Not happy that you're sick, but happy to finally put a name to it.

You know I have always been praying for you to get a dx, and I am so very glad that you have.  I hope the meds help with the spasms and that they will ease up for you.

Again, I'm so happy for you!!!  You know you can't leave this forum though, right?  We would send Quix after you....ha...ha...ha... You're part of this family and just stuck with us, no matter what!!

Love & Hugs
doni

[cjacks]

Penn

Great news!!    Out of Limbo Land.    Bringing a video was such a good idea. When I looked up PDD , the first site I found said that was the best way of dx.ing it .

Do You  think that there are still some sx. you have that are not explained by the PDD? I bet you'll be researching this for awhile.. as you said , there are a few secondary illnesses that are associated with it ,including MS .

For now you have a 'solid' dx.  Live with that for a bit , try it on and see how it fits and keep taping. and keep up with your timeline..  :)

What's the next move , just seeing how the extra Baclofen works. ( sorry about the spelling and I don't really remember the rx. that you stated in your other post)

I am so happy for you. Now you have something to work with.

Love  Light   Peace

Jo