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jennibf

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The twitches have moved lower, to my feet but they are still in my legs. My legs have been weaker and my FEET have been bothering me, my ankles hurt and feel weak when I walk and the fasciculations are in my feet and are almost constant. The insides of my feet (the arch?) are the most "twitchy". As I type this I am watching my big toe do it's own dance......omg...what is going on? I admire so many of you who have had to wait so long. I am afraid that if it were to be ALS, which we all know it's just PNS, that the diagnosis would take too long to get on rilutek and possibly even lithium?

This PNS is really sucking.
 

CindyM

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Hey Jenn- don't freak. My big toe used to twitch all by itself, too. then it stopped and now it is all spongy. All my toes have become suddenly double-jointed. It is really quite funny! I can bend them up the wrong way- towards my face. Never fails to bring out a giggle but you have to see it in person, I guess. :smile:
 

awieleba

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HI

what type of shoe did you wear today?

I started with twitches everywhere. they have setteled in my legs and feet as you describe. I have pain in my feet all the time due to muscle or fat loss but if I wear a higher heel shoe for a period of time, my foot will have fasics. One day after I dont rember what but I think shoe related my foot had fasics for 48 hrs on the side. I showed my hubby and he was a little freaked out. It went away and had not been back, thank God.

My ankles hurt alot too. MY feet are not that twitchy but just aching pain like what you would think arthritits feels like or it feels sprained. MY big toe on my weak left side feels broken 24,7 for the last 4 weeks.

Try to hold out, I have 2 emgs that were clean. and my biopsy was not that bad.......
 

awieleba

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cindy

Too wierd that you said that, my toes are doing the same. not on all but on some.......kinda strange....
 

Zaphoon

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Jenni

We're all here pulling for you. To calm you a bit, the twitching can be associated with many non-pathological conditions (this you already know), PNS being the most recently discovered (by folks on this very forum - of whom you are one).

In moments like these, it is imperative that all of us PNSers hang in there together. Remember that hysteria is one of the chief symptoms of PNS and you seem to be experiencing an episode of at least moderate hysteria. This is a good sign.

Hang in the Cindy. You are doing well to remind yourself that at this point, its PNS and PNS is non-life threatening (though terribly debilitating at times).

Seriously, we're all in this together!

Your fellow PNSer,

Zaphoon
 

jennibf

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Cindy, Isn't spongy bad? Yes, it was quite freaky when my family saw my fascics through my clothes, like an alien was inside of me (albeit a small one).

April, I wore tennis shoes today :(

Thank you both but this is really sucking.
 

CindyM

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I love your 'tude, dude (or should I say dudette?):lol:
 

jennibf

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Sugar aka Zapimp (so you refuse to change your moniker but I have to call you that),

Thank you for the laugh. One thing you failed to mention as a PNS is the huge swing and almost uncontrollable vacillations between crying and laughing of which I am doing both at this moment. Thanks to you all I am smiling and laughing because I feel understood and cared about. I cannot imagine going through PNS without you all.

Hugs,
Jennifer

P.S. BTW, do the doctors even know how to undo this PNS or do we have to do that, too?
 

awieleba

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Jenn

I Have those twitches that you can see through the jeans! They happened more in the spring and I have not had them in awhile if that helps you out! I had one time when my thigh muscle was spasming last month. But it has been a month since then. I dont think those were visable. But in the start for me, it was those big thigh ones that were coming through my pants. It freaked me out too. I have not had them that bad at all, I think It can get better. IT did for me. I am not saying that I am better but the big twitches that are through my jeans are.

hang in there, I am the same as you. This is all we can do. My twitching was soooooooo much much worse in the spring.
 

jennibf

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April,

That is exactly what mine did, in my thigh....still does but for days there we could just look over and see it happening (real time)...ha....

I am scared because like you, this is obviously progressive.
 

awieleba

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NO, my thigh jumping has calmed downed!

keep that in mind, it was bad in the spring and has not happen alot since. Ihave other things going but this is better...
 

Zaphoon

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Jenni,

Regarding your question as to if whether or not it is something the doctors can take care of or if it is something we, ourselves must tend to, here is the answer.

In some cases, PNS goes away with a definitive diagnosis of something but this is up to the former PNSer's discretion.

So, reasonably enough, in other cases, PNS eventually over rules all other given diagnosis.

It has been my personal observation that PNS baffles and stupifies all friends and relatives, especially after an alternate diagnosed has been given by competent medical authorities. It is hard enough for them to know what to think and how to deal with MS, ALS, PLS, SMA, etc but when it comes to PNS, whooa!

One thing has been proven for sure, PNS lowers anxiety and in that way, you can say it acts as an excellent and very cheap placebo!

The final research on PNS has been concluded. My hope is that more visitors will be able to calm themselves in their interim periods of diagnosis with the knowledge that PNS stands by as a viable, friendly alternative to whatever else they've come in with.

Zaphoon
 
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