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[Sammantha]

Hi, this is Sam... I am in a bad way right now, i keep having panick attacks and i cannot work or eat.... I went to the clininc and the doc is doing another EMG, because everything is pointing to ALS... So please pray with me that my EMG is normal, i think i will get sick............. I wish i had no idea what was wrong with me, i wish i never tried to figure it out, and i pray that my EMG is normal and i can live with the fatigue and all the other symptoms and i will never complain..

 

[crystalkk]

Hi, Sam

I 've been having really bad panic attacks also. The panick attacks will make your symtoms 10x worst.
They are horrible!

Did the doctor tell you that everything is pointing at als.

I feel the same way I much as I want to know whats wrong I don't if it's not treatable.
But say it is something treatable, and we are missing out on it.
Everytime I go to the Doctor and he says no ALS I feel good for a moment... and walk out confused .
MY hands and feet are atrophied, and when he tells me it's from lack of use I feel like he is insulting my intelligence. I am getting very spastic now. etc., you know how it goes.
But according to him my last emg was normal.

I am praying for you, when is your emg?

crystalkk

 

[Icanmanz]

Hi, Sam! Read your post, dear, and it tore at me. I will be praying for you, and I am sure everyone on this forum will be doing the same thing. My son's doc always told him that stress is really bad for you. You said that your hands and feet have atrophied, and the doc said lack of use. Can he back that up with another doc? I cannot understand why this disease is so hard to detect. Does anyone have an answer?

Irma

 

[crystalkk]

Hi Irma,
I think you confused what I was saying to Sam about the run around I am getting from the ALS specialist
that my hands and feet are atrophied from lack of use. Sounds crazy doesn't it. I don't beleive it. My EMG's keep coming back normal and I don't think he knows what tell me. I asked 2 PT's and they just looked at
me and shook there heads.

cyrstalkk

 

[ltr]

These posts sound all too familiar. The problem with the docs is that we have educated ourselves on a lot of neuromuscular diseases and then when they make a dumb comment like your hands and feet are atrophied because of not using them, well we lose all confidence in THEIR intelligence. All those stupid remarks do is make us want to keep searching for answers and jump to different docs. They should always talk to us as if we are intelligent. And, Crystal, that is what I have been saying all along.....it is important to get a diagnosis for us that want one because we might have something TREATABLE. Why let our bodies atrophy and progress until we can't use them when there is a chance it can be stopped. I know some on this forum don't agree, but I think it is ignorant to let your body die because you don't want to know if it's bad news. And the testing....well, I did not fit any of the criteria for myopathy, normal CK's, normal EMG, but positive myopathy on muscle biopsy. If I didn't persist on getting a diagnosis and find that one special doc that went the extra mile and believed me, I would not have received any treatment and I would deteriorate just like a PAL. So, don't give up. If your tests are negative, but you know there is something seriously happening to you....don't stop until you find a doc that will help you.

 

[Jamiet]

Great Post Leslie...you summed it up....

That is why we think some doctors are not caring or are being mean, not considerate. Mabye they are just ignorant to our level of expertise.

Then again....i went into the ALS specalist office, told her how much i educated myself on neuromuscular diseases and then, they treat you like you know too much and tell you to quit teaching yourself when you are telling them what is wrong.

Well, we're damed if we do and damd if we dont'

Sam...i am praying for you, hang in there..ok..

rgds,

Jamie

 

[Icanmanz]

Again, this leaves me in total awe!

Irma

 

[Cornelia]

Panic attacks are horrible, they magnify whatever you are feeling physically, your mind
keeps going in circles and it is a vicious cycle. People tell you oh relax, and go read a book. If I felt calm enough to concentrate on reading I wouldnt be in panic mode.
By the way I also understand the one where you go to the Dr and he tells you you're
fine and not to worry, yeah that works, until you review the office visit detail for detail
and on reconsideration, maybe he didn't make enough of an effort, was dismissive,
and way to casual.

I'm sorry you are experiencing this. What I find helps me is keeping busy even with
silly stuff, even if its just for 10 minutes or so. good luck with your tests
best wishes cornelia

 

[Sammantha]

Itr you are right................... One of my neurologist suggested that the atrophy in my hands and back could be from lack of use or being immobile.. At the time i wished i had said, oh when was this time that i got to rest and not move for months? The order for this next EMG is specifically looking for ALS and to rule it out, because that is the last thing it could be. The doc said he would help me even if they never find out what it is.. This is my first EMG that will be looking or rather trying to rule it out. The doc prescribed me an antidepressant that made me super sad and shaky. I also had panic attacks and kept crying. I stopped taking it, and continue with my two old ones Provigil and Klonopin. Plus the anti depressant made me yawn, terrible and gave me severe pain in my temple and cheek area, muscle spasm i guess... I will be on temporary disabillity for the next month and i plan on getting myself as healthy as possible, physically and mentally. Working with children has become impossible right now, i am going through way too much stress.... My emotions change with the wind. Luckily i am not having panick attacks though, now that i stopped that medicine. Its kinda funny that an anti depressant can have the exact opposite effect on me. Thank you all for responding, i really need the emotional help. I finally told my husband what ALS is! He has been with me to all of my appointments and to this last one at the ALS clinic! Ignorance is bliss, i guess thats why he is never stressed out, funny thing is he did not seem upset when i told him. He is so calm like that, he takes things as they come. I dont like talking about all this stuff to my family because it makes them upset or that is all they want to talk about, and my friends and co workers just found out i was being tested for it when i went on temporary disability. They knew i have been going to neurologists for half a year but never understood why and never really asked... I guess if i do not talk about in my family life,, it does not exist as much........ So when i get on here i feel like this is my sanctuary or my confessional!

 

[4rhl1981]

Well said! That is exactly how I feel. For three years I was told I had PTSD and that was why I had memory problem. Over 3 years later I got an MRI and found out my memory problem were from being repeatedly mortared in Iraq, which resulted in a TBI. So make your insurance work for you they made you work to pay them and the MDs' only have a job because you go to see them so technically they work for you!

 

[duplinwino]

Shoot, I read this thinking it was a recent post of Sammantha's... anyone heard from her?

 

[crystalkk]

duplinwino,

I read it thinking the same thing, I have been thinking about her constantly. I PM'ed her serval times....didn't hear back.
She has not been on since the night before her appointment for the emg.

 

[CindyM]

Oh I hope everything is OK.. Sam if you are out there, we are thinking of you! Cindy