Blepharospasm Bulletin Board

Apraxia question
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Posted by: In Indiana ®
06/26/2009, 22:04:44


When I have problems with apraxia, I feel very tired all over. I used to think it was just because I was trying to keep my eyes open and it was exhausting, and would take a nap. Now, I wonder if it's because all of my muscles are weak, but the eyelids are what I notice.
Does anyone else with apraxia have a similar experience?



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Re: Apraxia question
Re: Apraxia question -- In Indiana Top of thread Archive
Posted by: Deanna, New York City ®
06/26/2009, 22:55:54


I have Apraxia (and Blepharospasm to a lesser degree). I don't find my other muscles are weak, but it is sometimes exhausting fighting to keep my eyes open. I use tape on my eyelids all the time now and it helps control the Apraxia and the Blepharospasm. The tape I use is Nexcare clear tape; I make sure my eyes can close and I use lubricant eye drops, and make sure to remove the tape very carefully (using some makeup on the eyelids helps).

Deanna




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Re: Apraxia question
Re: Re: Apraxia question -- Deanna, New York City Top of thread Archive
Posted by: In Indiana ®
06/27/2009, 07:06:40


Hi, Deanna-
Thanks so much for your reply. When my son and I have apraxia, we are weak everywhere. Just completely exhausted. Sometimes it's hard to even hold our head up because our neck muscles get weak. We usually just go to sleep at that point because there's not much else we can do.



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Re: Apraxia question
Re: Re: Apraxia question -- In Indiana Top of thread Archive
Posted by: Deanna, New York City ®
06/27/2009, 10:24:19


My Apraxia is always with me - some days a little better, a little worse, but always there.

Could your muscle weakness be something other than Apraxia? I was originally tested for Myasthenia Gravis by my first neurologist who wouldn't listen to me when I gave him info on Blepharospasm and Apraxia.

Deanna




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Re: Apraxia question
Re: Re: Apraxia question -- Deanna, New York City Top of thread Archive
Posted by: In Indiana ®
06/27/2009, 17:38:59


Thanks, Deanna-
I appreciate your thoughts. I am trying very hard to find out exactly what it could be.
It's tough, and I appreciate so much those on this message board who have allowed me to share ideas and ask questions. Even though my father and I were diagnosed with BEB, and at that time it seemed like that had to be it, obviously it's not.
I do fairly well, but with a child now with the same symptoms, it's tough. I can't tell you how horrifying it was when I first realized that he has blepharospasm, too. He missed so much school and was in so much pain. He has to get the Botox every 4 weeks or else he is in bed in so much pain he can't stand it. How could an 11 year old have blepharospasm? And apraxia, too? I just need to find answers for his sake. Maybe I won't ever find answers, and we'll just need to get our Botox and do the best we can. I just have to try.
Thanks.....




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Re: Apraxia question
Re: Apraxia question -- In Indiana Top of thread Archive
Posted by: Norm ®
06/27/2009, 13:21:47


Hi Indy,

I feel my biggest problem is apraxia because botox only works for a short time and not very well but does help. I get muscle tightness in the jaws that the last time the doctor didn't give me botox in to try and pinpoint certain muscles. And as we know a lot of times when we treat one area you notice another area more.

When my eyes are at their worse I am constantly tired and my eyes feel like a balloon being inflated behind my eyes causing pressure and the jaw, neck and shoulders are stiff.

If I got botox in all those areas it would be a fortune and I would probably fall down from lack of any muscles working.

I have put the exhaustion off onto my work habits and medication.

Thanks for everything,
Have a great weekend,
Norm
*S*




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Re: Apraxia question
Re: Re: Apraxia question -- Norm Top of thread Archive
Posted by: kenavis ®
06/27/2009, 23:10:23


Hi NORM This how my Eyes are doing right now the Prsseure behine my eyes are causing jae an nech hart an my body ach all over thank
are learnig to from you an other people how they fell too thanks to every body out thier
kenavis



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Re: Apraxia question
Re: Apraxia question -- In Indiana Top of thread Archive
Posted by: Shirley Barr in New Mexico ®
06/27/2009, 17:07:46


Hello Kelly,

Having apraxia did tire me out and still does at times. It is tiring to struggle to get your eyes open, and then have them just close again.

Before I had my myectomy (2001), I would shake my head, move it around, raise my eyebrows and sometimes make noises or touch somewhere on my face just to get my eyes to finally pop open for a short time before they closed again with a spasm (or just because I blinked)....anything that closed them...it didn't matter...once they were closed, I had difficulty getting them open. I spent a lot of time struggling to get them to open briefly so that I could see a little bit of what was going on around me. Things are much better now but I do remember those days!

So yes, it is very tiring...my eyes felt very tired and I rested them often, but I never perceived it as a generalized weakness/muscle problem but one of fatique from the ongoing struggle.

Napping during this time and even now mainly consisted of me relaxing on the bed with my eyes closed and not trying to open them. Occasionally I would doze off for a few minutes and would feel much better upon awakening. I'm talking 5 maybe 10 minutes of actual sleep here. Most of time was and is spent just relaxing with eyes closed.

Even when I have a bad eye day at this point and have struggled for hours to keep them open, it is primarily my eyes that feel tired and a brief rest will generally alleviate any feeling of muscle fatigue that I may have although my eyes may continue to feel tired.

Clear as mud! ;-)

Shirley in New Mexico




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Re: Apraxia question
Re: Re: Apraxia question -- Shirley Barr in New Mexico Top of thread Archive
Posted by: flipflops22 ®
06/29/2009, 00:18:34


Hi In Indiana,

I feel the same way you do!!! If I have time, I do lay down and take a nap! Like Shirley said, sometimes it's just laying down and resting the eyes!!

Most of the time I doze off, but feel much better when I wake up! But yet, when I get up in the morning, after sleeping all night, my eyes usually don't want to stay open!! So, go figure!!

This is most definitely a weird disease!!!!!!!!!!

Take care!!




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Re: Apraxia question
Re: Apraxia question -- In Indiana Top of thread Archive
Posted by: Crystal Blue ®
06/29/2009, 06:33:04


Hi everyeone:

I have apraxia and to a lesser extenet BEB x 2 years. Until very recently, ( botox actually worked this time), I have to struggle every day to keep my eyeids open for even a short period of time. As others have said, I open one or both eyelids manually hundreds of times per day ( by lifting up on my eyebrows)or tilt my head back to keep them open so thag I can see a little longer, hum, sing, whatever will work.

I have a short rest every time I put my eyedrops in and then have a longer one in the afternoon if I can. On bad days, I am totally exhausted and worn out and feel sore everywhere. I have to turn down offers to take me out, etc, as I am just too tired overall to be able to go anywhere. However, once I have a rest, I seem to pick up for awhile. This varies. On really bad days, I find myself resting many times during teh day - not always sleeping, but resting and I usually use a cold spa mask on my eyelids to help me relax. I often fall asleep for 10-15 minutes but other times for an hour or so.

However, I do not think that I have the entire body weakness to the degree that you are talking about. Hve you been assessed by a movement disorder specialist?

Take care,

Crystal blue from Ontario




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Re: Apraxia question
Re: Re: Apraxia question -- Crystal Blue Top of thread Archive
Posted by: catherine pender ®
06/29/2009, 07:09:38


This was always my problem as well. To try to decribe it to other I would say hold your arm out (like forever) and see how exhausting it is trying to keep it up.

I would rest with a cool pack on my eyes, expecially if I was going out that evening. 4 o'clock seemed the best time for me.

Since the 2 surgeries they are so much better but sometimes I still feel like the eyes get so tired, expecially if I am anxious about something. The past week the eyes have been partitulay tired. I think allergies are kicking, which I never had until last year!!!!! One more thing

Catherine




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Re: Apraxia question
Re: Apraxia question -- In Indiana Top of thread Archive
Posted by: Amanda from Toronto ®
06/29/2009, 08:14:00


I am tring to find information about Apraxia through Google. The information that I got has nothing to do with eyes. It relates to speech. Do you have Apraxia only or you have BEB and Apraxia?

Amanda




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Re: Apraxia question
Re: Re: Apraxia question -- Amanda from Toronto Top of thread Archive
Posted by: lightwave ®
06/29/2009, 09:06:47


Amanda,

If you will look on the main BEBRF page, you will find information about apraxia. Also, when you search for information on the web, try searching for "apraxia eyelid opening". Good luck in your search.

Glynda in Houston, TX




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Re: Apraxia question
Re: Re: Apraxia question -- Amanda from Toronto Top of thread Archive
Posted by: tomspasm ®
06/29/2009, 15:55:26


From the NINDS site on "What is apraxia? -

"Apraxia (called "dyspraxia" if mild) is a neurological disorder characterized by loss of the ability to execute or carry out skilled movements and gestures, despite having the desire and the physical ability to perform them."

"There are several kinds of apraxia...the inability to carry out facial movements on command such as licking lips, whistling, coughing, or winking...the inability to make fine, precise movements with an arm or leg...the inability to make the proper movement in response to a verbal command...the inability to copy, draw, or construct simple figures...difficulty moving the eyes on command.

So it is a wide ranging term, sort of like "Dystonia" describing all the various movement disorders of the eyes, mouth/jaw, neck/shoulder, legs/feet, etc.

When someone on this Board says they have Apraxia, I take it to mean that they are unable to open an eye without manually pulling up on the lid with their fingers.

TomSpasm




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Re: Apraxia question
Re: Re: Apraxia question -- tomspasm Top of thread Archive
Posted by: Shirley Barr in New Mexico ®
06/29/2009, 16:40:41


"When someone on this Board says they have Apraxia, I take it to mean that they are unable to open an eye without manually pulling up on the lid with their fingers."
TomSpasm

Not exactly. Apraxia, as I understand it, is the inability to initiate eye opening or difficulty in opening the eyes...in the absence of a spasm.

Ptosis can also makes it difficult to open the eyes and with ptosis, the upper lids will just tend to drift shut. Sometimes extra loose skin on the upper lids will cause a ptosis and sometimes Botox will cause a ptosis (lids at half mast)as a side-effect when the toxin gets into unwanted areas of the middle of the upper lid. A doctor should be able to determine this fairly easily by checking the weakness/strength of your upper lids.

Upper lids may not "drift" shut or closed with apraxia....but once a spasm or a blink does close the eye, one is unable to "open" the eye again for varying periods of time or finds it extremely difficult to do so.

A doctor will often have you open and close your eyes on command to determine if there is an "apraxia of eyelid" problem. Typically if you are able to open your eyes on command, you DO NOT have apraxia. Sometimes this response is slightly delayed so you might have a very mild apraxia problem. With a moderate or severe "apraxia of eyelid opening", one would struggle or be unable to initiate opening of their eyes for...maybe 5 seconds to much longer before the eyes would finally open.

With apraxia of eyelid opening....when one is trying to open their eyes, they typically will raise their brows or move their head around in an attempt to open their eyes. This is all in the absence of an ongoing spasm.

Thanks for bringing up the fact that the term "Apraxia" is indeed a wide ranging term and is not always EYE associated.


Shirley in New Mexico




Modified by Shirley Barr in New Mexico at Mon, Jun 29, 2009, 16:45:11

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Re: Apraxia question
Re: Re: Apraxia question -- Shirley Barr in New Mexico Top of thread Archive
Posted by: tomspasm ®
07/01/2009, 14:58:36


Ok Shirley, I'm not sure I understand the difference between what you are saying and I am saying...so let me try to phrase it a different way:
When I have what I consider to be apraxia, no matter how hard I try, I can't open my right eye without using my finger. It is not squeezing shut so there is no spasm to speak of, the eyelid has simply fallen closed and I have no ability to open it. This is in contrast to many other times when both eyes are repeatedly squeezing shut, and I am repeatedly successfully opening my eyes back up to be able to see.

The really weird thing though is that if my right eye is shut down and I can't open it (which I think of as apraxia), and I reach in my pocket for my keys and reach my keys toward the keyhole, the eye will pop open to help see where the keyhole is, then immediately shut back down.

Fortunately for me, although my right eye was shut down about 70% of the time beforehand, once I removed my metal fillings, that apraxia issue became a relatively rare event.

TomSpasm




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Re: Apraxia versus weakness
Re: Apraxia question -- In Indiana Top of thread Archive
Posted by: tatia ®
06/29/2009, 16:21:26


Hi Indy,

The biggest mistake I ever made was this: Early on when my neurologists asked if I was experiencing weakness with my episodes, I responded, "I'm not really sure, I don't think so...? I don't really feel weak, I just feel completely and utterly tired and exhausted."

I still never actually feel weak, but I have done some experimenting. I have used a peak flow meter (a device usually used for asthmatics to measure breathing capacity) when I feel normal my peak flow is 475. During episodes of fatigue, my peak flow significantly decreases, sometimes it's less than 200. I have asked people to arm wrestle me during and after episodes, and they are amazed at the difference - they can feel it better than I can, I just know I'm losing or winning. I discovered that during episodes, either my stride becomes shorter or I have to increase my effort to maintain the same stride.

My early, apparently incorrect answer may have prompted my doctors to overlook or rule out conditions that should have been explored.

I may be wrong, but I have come to understand that apraxia is a problem where the signals from the brain are not coordinating correctly with the muscle to execute the motion. Then there is ptosis, where you can't fully open the eye, or open it at all, because of weakness of the muscle itself - the message gets through but the muscle doesn't respond.

Thanks for bringing this to discussion.

Tatia in Phoenix



Modified by tatia at Mon, Jun 29, 2009, 16:24:50

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Re: Apraxia versus weakness
Re: Re: Apraxia versus weakness -- tatia Top of thread Archive
Posted by: catherine pender ®
06/29/2009, 18:16:01


for a good explanation google apraxia - eyelid and the 5th article down under BEB.org is a explanation from Dr Anderson

Catherine




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Re: Apraxia question
Re: Apraxia question -- In Indiana Top of thread Archive
Posted by: pdb ®
06/29/2009, 19:31:31


After watching the discussion so far, I thought I would chime in. Apologies of I'm just repeating what everyone already knows.

Apraxia

First, the word apraxia:

"The word apraxia comes from a Greek word "a" which means "to do without" and Greek word "pratto" which means "to do"..

I bet you didn't know I studied ancient Greek did you? Nor did I, this comes from jayseducation.com so go look it up there if you want.

So any condition where one cannot voluntarily bring off what ought to be a normal movement, could be described as apraxia. Hence you will notice that in speeches at the conferences and elsewhere, the guru doctors all carefully use the full term "apraxia of the eyelid opening" when talking about the condition often associated with or confused with blepharospasm.

The difficulty is that a blepharospasm patient often exhibits some of the characteristics of apraxia, i.e. a spasm may close the eye, but after the spasm stops the eyelid will not open. Others' eyelids close with no spasm, or a very light spasm, but then they can't open them.

At the Seattle support group meeting, Dr. Hamilton explained a view of apraxia with the illustration that if a ball was thrown to someone, they likely will by reflex action reach out and catch it. But if instructed to stick that arm out, they might not be able to do it. So apraxia hits you when it chooses to foil you, and it seems that happens more readily if you consciously want to open the eyes as against just have them "automatically" close then open in a blink.

What causes apraxia of the eyelid opening? A great list of things might do that, and others on the bb have chased those down. But if it is not caused by any of those, and it is just a problem attribute of one's blepharospasm, then its cause like that of benign essential blepharospasm is unknown.

Ptosis

I'll spare you the Greek (LOL). Lets talk about ptosis and the possibility of confusing ptosis and apraxia of the eyelid opening. I think Shirley described ptosis well in her post, so check that out.

Botulinum toxin treatment in the wrong muscles causes ptosis. Too much skin on the top lids can cause them to get in the way of vision, and that is also ptosis. Ptosis from too much skin might well be exacerbated by us blepharos stretching the skin of the upper lid as we fight the spasms or try to push the spasm-closed lids up. But blepharospasm itself does not cause ptosis

Similarly ptosis is not apraxia and doesn't cause apraxia - the eyelid is not failing to move away from the closed position with ptosis - it opens as much as it can, it's just not open enough to enable proper vision. The nuance here I believe is that muscle doing the opening is still working on command - it just doesn't go all the way up anymore.


This website, and this bulletin board's focus on blepharospasm, meige and HFS patients and their issues and interests are the great resource that we all have. Some people will never find us because of bad diagnosis. Others will find us erroneously through bad diagnosis. Hopefully we can find more of the former, and be of some assistance to the latter, within that focus.


Cheers

Peter in sunny Seattle (yay!)



Modified by pdb at Mon, Jun 29, 2009, 19:43:27

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Re: Apraxia question
Re: Re: Apraxia question -- pdb Top of thread Archive
Posted by: Crystal blue ®
06/29/2009, 22:10:50


I agree with what is being said; sometimes to make it easier for ourselves, we use acronyms or shorten proper terms. As others have mentioned, Apraxia is a general term that is used in a similar manner to dystomia. In my past life as a physiotherapist we would use it mostly related to speech and walking.

The full term that is used by the medical world is Apraxia of Eyelid Opening or Apraxia of Lid Opening (ALO). Both my physiciams identify this as my primary diagnosis on any forms that they fill out for insurance purposes, etc. If you search the Internet in addition to this site, using Apraxia of Eyelid Opening or ALO you will find more info. The only problem that I have discovered is that you have tp pay for many of the full articles that seem to be the most relevant.

I have been diagnosed with severe apraxia. My eyes drop closed (the soft close)and then it is almost impossible for me to to open them voluntarily. They are so heavy and will not respond to commands to open. I have very little spasm. Usually I just give up trying to open them voluntarily and waiting for them to open themselves because it takes so long and just open them manually with my fingers. Many of the sensory tricks I used before do not seem to work as well any more. Once they are open they may stay open for a while or close within seconds again. On those days/weeks, I am really functionally blind for most of teh time.

I am currently trying ptosis crutches which still need more adjustmenst but are helping more on bad days.

All the best, Crystal Blue from rainy Ontario



Modified by Crystal blue at Mon, Jun 29, 2009, 22:14:03

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Re: Apraxia question
Re: Re: Apraxia question -- Crystal blue Top of thread Archive
Posted by: pdb ®
06/30/2009, 09:11:36


Hi Crystal B,

Is it correct that your eyes blink normally at times between the apraxic (nerw word?) openings?

Just curious

Peter




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Re: Apraxia question
Re: Re: Apraxia question -- pdb Top of thread Archive
Posted by: Crystal Blue ®
07/02/2009, 19:55:30


Peter:

A very interesting question. Generally, I guess I would say that I blink much less then other people.

How can I describe this .....Early on after Botox injections, I can blink more normally in between the "apraxic" blinks. It seems like I hold my breath at almost every blink to see if my eyes will open again normally. When they do, I am so happy that the Botox is at least working a bit. Then as I am more tired, or at the end of the day or as the Botox cycle is wearing off( generally only a few weeks for me), the blinks become longer and longer and I struggle to try and open my eyelids up so that they will not turn into "apraxic" blinks, e.g. I manage to wriggle my eyes open before they go into the aparaxic ones. There seem to be very few normal blimks at this time.

As the cycle is really ending or I am really having a bad day, it seems to me that I am rarely having normal blimks. I only have the longer blinks where I can barely manaage to struggle to get my eyes open before they stay closed or I have the truly "apraxic" ones. The "apraxic" ones seem really long to me - 30 seconds and more. So I usually don't wait and keep trying to manually open my eyes. At this point the sensory tricks don't work very well if at all. By the time I go back to my MD, I am manually opening my eyes virtually all of the time or am functionally blind without doing that.

After Botox injections, the the cycle starts all over again. I have had very little relief with Botox until two weeks ago- I am going to write another post about that soon.

In a rambling way, I hope that answered your question. I will have to pay more attention to my blinks in the future!

Thanks for asking, Cystal Blue



Modified by Crystal Blue at Thu, Jul 02, 2009, 20:05:52

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In what instances might ptosis be mistaken for apraxia?
Re: Apraxia question -- In Indiana Top of thread Archive
Posted by: tatia ®
06/30/2009, 17:35:19


According to the BEBRF article on apraxia by Dr. Burns, "In the patients with apraxia of lid opening, there are periods of persistent involuntary lid closure despite adequate botulinum toxin treatment of the orbicularis and brow depressor muscles. The patient will usually demonstrate brow elevation in a futile attempt to open the lids. Patients often report that gently elevating the lids open with their fingers or touching the skin on their temple can sometimes break the attacks. When the episode resolves, there is no evidence of ptosis or levator muscle weakness.

In ptosis associated with most conditions, weakness is continually present. Ptosis may be mistaken for apraxia in those conditions which cause episodic weakness.

"episodic weakness: A characteristic of certain neuromuscular, cardiovascular and metabolic disorders such as myasthenia gravis, polymyositis, hypoglycemia, abnormalities in blood potassium levels, and cardiac arrhythmias and conduction blocks."

periodic paralysis, ion channel disorders - see hkpp.org
visit muscular dystrophy association (MDA) website for information about these and other possible causes of eyelid drooping.
Not trying to be argumentative or stir the pot, I'm trying to leave a trail of breadcrumbs for the few who might end up here needing this info.

Thanks!
Tatia



Modified by tatia at Thu, Jul 02, 2009, 00:51:40

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Re: In what instances might ptosis be mistaken for apraxia?
Re: In what instances might ptosis be mistaken for apraxia? -- tatia Top of thread Archive
Posted by: Crystal Blue ®
07/02/2009, 19:28:38


Totia:

Thanks for the quote from the article, "In the patients with apraxia of lid opening, there are periods of persistent involuntary lid closure despite adequate botulinum toxin treatment of the orbicularis and brow depressor muscles. The patient will usually demonstrate brow elevation in a futile attempt to open the lids. Patients often report that gently elevating the lids open with their fingers or touching the skin on their temple can sometimes break the attacks. When the episode resolves, there is no evidence of ptosis or levator muscle weakness.

..... this is really what I am like. I use the frontalis and corrugator muscles in my forehaed to keep my eyes open as much and as long as I can. My right eyebrow particularly is up much higher than my left one almost consistently especially when whatever Botox effect I get, is running out. When my eyes are open they look virtually normal with no ptosis. I have had ptosis twice following injections. It was not a great experience as many others can attest to.

The Botox injections deal with the little spasm I get and allow me to be able to open my eyes manually (previoulsy I could not do that,they were too tight). Touching the side of my left eyelid will usually open both my eyes, atleast for a little while.

I need to look up the ion information sometime when I get a chance.I know that others ahve mentioned it before. My greatesst worry is that this is only the beginning of a disease process like Parkinsosn's or supra nuclear palsy (PSP). So far, though, my physicians have said that it is not.

Crustal Blue



Modified by Crystal Blue at Thu, Jul 02, 2009, 19:30:19

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Re: In what instances might ptosis be mistaken for apraxia?
Re: Re: In what instances might ptosis be mistaken for apraxia? -- Crystal Blue Top of thread Archive
Posted by: In Indiana ®
07/02/2009, 20:32:04


Hi, Crystal Blue-
I understand what you are saying about your greatest worry being that you have Parkinson's or supra nuclear palsy. I went a whole summer convinced that I had Parkinson's, due to my eye issues as well as the fact that my legs always seemed to be stiff. It wasn't until I figured out that I have an ion channel disorder (hyper kpp) and shouldn't eat foods with potassium when I realized that whole summer, I had been eating lots of cantaloupe, which is very high in potassium. I haven't had that problem since.
If you have a chance, please look up the new Quest article. It has lots of great information, including how to get the genetic testing done at no cost if this is something that you and your doctor think is worth pursuing.
One of the main reasons that I've been so suspicious that there may be other people out there with apraxia and also periodic paralysis is just that the apraxia itself can be like a short episode of paralysis - you just simply can't open your eyes for a moment of time. There are also many other symptoms that are similar, as I've outlined in a previous post.
I wish you well in pursuing answers, and am hopeful that what you find is that you have a condition where more treatment options are available. Please keep us posted!



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Re: In what instances might ptosis be mistaken for apraxia?
Re: Re: In what instances might ptosis be mistaken for apraxia? -- In Indiana Top of thread Archive
Posted by: kenavis ®
07/03/2009, 06:24:36


Hi You can take a test a skin test it will tell you what you can not eat. are what you pollen dust mold an other. Even house hold cleaners . Years ago I had test an had to take shots. all ways ask the doctor an they will give you a least of what you can eat an not eat are what you can be around.

also braving in air are a good work out in a gem all ways ask you doctor. as of now I have not took Botox shots

also you can ask to have hair simple an a blood test
an mabe this will help. doctors can look at your finger nails an tell you a lot about ects so thanks for the beb an have a good day
kenavis




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Re: In what instances might ptosis be mistaken for apraxia?
Re: Re: In what instances might ptosis be mistaken for apraxia? -- Crystal Blue Top of thread Archive
Posted by: pdb ®
07/03/2009, 11:24:08


CB,

Re your concern "My greatest worry is that this is only the beginning of a disease process like Parkinson's or supra nuclear palsy (PSP)" sounds like you are worried what you've got will get steadily worse and much nastier. My understanding is that dystonia may spread to additional areas, but it does not turn into another disease or become life-threatening the way those other diseases you mention do.

Cheers

Peter




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Re: In what instances might ptosis be mistaken for apraxia?
Re: Re: In what instances might ptosis be mistaken for apraxia? -- pdb Top of thread Archive
Posted by: Crystal Blue ®
07/03/2009, 21:20:09


Hi Peter:

I have the same understanding as you. However,I have read in the past that the apraxia type of clinical picture, e.g. the loss of voluntary eye movements especially the inability to open the eyes is sometimes an early symptom of these two disease processes. The inference then is that the person is not correctly diagosed early on. As other symptoms develop, the clinical picture becomes clearer.

There is probably no reason for me to be worried about this and I am not looking for another disease process - that's for sure. We all have enough to deal with. Just sometimes have this niggling feeling... especially when my symptoms don't quite line up and my physicians find me quite a puzzle.

Have a good weekend,

Crystal Blue




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Re: In what instances might ptosis be mistaken for apraxia?
Re: Re: In what instances might ptosis be mistaken for apraxia? -- Crystal Blue Top of thread Archive
Posted by: June and Gary ®
07/05/2009, 07:46:00


Hi Everyone,

I have read most of these post but not all as the kids will be over in a bit to fix some things and chow down.

I think they will be pleased to see Gary's eyes open so much, often both at the same time. Clearly the brow pin has helped immensely. But I think it will be a few days to maybe a week or two for full results due to the extensive surgery done on the right eye for the ptosis.

Gary has so many symptoms with weakness speech eyes neck and it is hard to sort it all out. I have read about apraxia and it scares me to death. So far none of his doctors have diagnosed him with that.

Sorry I do not get here more, frankly I am still exhausted from taking three trips, medical or dystonia related in the last four months.

As a caretaker I do indulge in things I like such as reading and our pets. So it is not poor me by any means but tired is tired.

Hope you all have a great Sunday.

June




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Weakness question
Re: Re: In what instances might ptosis be mistaken for apraxia? -- June and Gary Top of thread Archive
Posted by: In Indiana ®
07/05/2009, 18:17:05


Hi, June-
There are a few of us on this board that deal with weakness like you are mentioning.
Tatia - where are you :o)
My son and I both sometimes can't talk or hold our head up because our neck muscles are so weak. We choke when we swallow. Fortunately, it comes and goes, and we are always thankful when it goes.
Do you notice that Gary has a hard time keeping his eyes open when his other muscles are weak? Is he always weak, or does it come and go?
Take care -



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Re: Weakness question
Re: Weakness question -- In Indiana Top of thread Archive
Posted by: June and Gary ®
07/05/2009, 18:55:37


Hey Indiana,

Actually the weakness and speech problems, oh and chewing is difficult all began after his 2nd DBS/ deep brain stimulation surgery. Before that it was just the eyes, meige's and neck.

But if he looks good in the morning then if he is tired by evening you can really tell. And he really hasn't spasmed but is just locked in to neck bent and eyes rarely opened.

To answer your question after company left he went to his chair and looks tired. He also said his eyes weren't open so what you say makes sense or goes right along with comes and goes.

Really this is the most baffling condition I have ever dealt with in my life.




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Re: Weakness question
Re: Weakness question -- In Indiana Top of thread Archive
Posted by: kenavis ®
07/06/2009, 03:20:27


HI June AN Gary an Tatia

I have the same problem like you and the other trying to eat .with out choking an swallowing

So when Im out eating I will go to the bath room an stand up an take a deep breath . This has help me but some time I it wont work
most of the time i have some with me to help me when my eyes closes on me.I went out by my self to a coffie shop an drink coffie an latter own I eat a some thang an i started to choke an could not swallow. I told the cook an they were real nice because frinds understand each other

About talking when I talk it sounds to me like Im muming an I had a lot of my friend trying to help to speak plainly
so thanks to you an every body on this board i can get answers

so have a good day
kenavis




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Re: Weakness question
Re: Re: Weakness question -- kenavis Top of thread Archive
Posted by: In Indiana ®
07/07/2009, 06:21:48


Hi, Kenavis-
Is there an MDA clinic in your area? I think they may be able to offer you some help at little or no cost.
If you get weak and mumble instead of being able to speak and has trouble swallowing sometimes, that sounds like what happens when someone has "periodic paralysis", especially if it comes and goes. People who have periodic paralysis also can get muscles spasms that can affect their eyes or any other muscle.
Here is a link to more information about the different types of periodic paralysis.
http://hkpp.org/pursuing-a-diagnosis.pdf
Take care.



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Re: Weakness question
Re: Re: Weakness question -- In Indiana Top of thread Archive
Posted by: kenavis ®
07/08/2009, 01:29:24


RE: WEAKNESS question from Indiana

Thanks for the web an the site WE have a mda in Beaumont TEXAS an Houston I read the about the differant paralyses: I was in a car rack an was nock unconoius Im wating to here from all the parties al all the other va an disability board but thesse guyes keep you on hold

i was told I would i would get help 1m 62 an half have you heard of blood red dna ions an hught sugers levels an low i had my a lot of bones broken over the yars so i just got to used biofeed back an breaving an
walk the talk an talk the walk an dont lets my inter being bur my mind i can handdle what come my way an i will will the race so thanks
i can call the mda but i dont have any insurance an i got to have a Doctor an i dont have one
only the Va I written on web site after web site an tryed to get help so we all here to help each other an thats all that matters you can logon
to kenavis an i wont to weite a book an make a movie so like Paul Harvy

said have a good day
kenavis




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