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boxer22

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Hello agian everyone, Its been a while since I have posted although I am still reading all of your post. Let me just start off by saying that I have been on pazil now for about 2 months and it has helped me out more then i could ever imagine with my stress and anxaity. With that being said my orignail sympotoms are know better. I atually have lots of new symptoms, but the diffrence with the medicine is now i feel as if i can deal with them eaiser without freaking out or thinking worst case scenoros although of course ALS is still in the back of my mind. I am still having the fasciculations everywhere all the time. I have a horrible tremor now also, i mean its bad. My hands, legs,jaw,feet all have tremors. When i am walking down my stairs my legs feel so shaky and unsteady. I have also started having (what i really hoped not to start having) is really horrible cramps/charly horses just doing the slightest movement and even just lying there some time, or something as simple is trying to scrach my back will bring on a horrble cramp. I also have been having an issue where i feel drainge or mucas in the back of my throat thats hard to get up. If I really try i can get it up but its not easy. I hate that i have the symptoms because mentally i am feeling so much better, ya know. Should I go back to the docs about my new symptoms or honestly should I just wait it out? Thanks guys.
Ashley
 

comfortable with ALS

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Run To The Emergency Room Right Now

LOL! thats an inside joke just so everyone nos... i think your going to be great ash! but i think it would give you a piece of mind to get told no you dont have als!even though ive been told no it makes me feel better..even though i drive my hubby nuts and cry everyday about it...iam trying to focus on the baby and you annmarie have been a great help to meeeeee! Annmarie always making me feel better when she is going through such a difficult time i just adore and love her. I no she is an angel and has always made everyone on this site feel the best! i went through all her post and not one time did she ever say anything neg about anybody, just all good stuff..she is great.. love you am! ash i think youll be great iam goinf to psyciatrist tomorrow and hopefully he will give me meds. Love ya jenny and baby girl
 

ltr

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Let's remember the thread is about Ashley.......

Ashley, it sounds like you are handling things really well. If it will help to ease your mind further I would make an appointment and let the doc know about your new symptoms. I'm sure the doc will understand and really hope he/she will check the symptoms out. If it helps you any, I have had every single one of the symptoms you posted.
 

boxer22

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Ashley, it sounds like you are handling things really well. If it will help to ease your mind further I would make an appointment and let the doc know about your new symptoms. I'm sure the doc will understand and really hope he/she will check the symptoms out. If it helps you any, I have had every single one of the symptoms you posted.


Thank you for replying leslie, I was hoping that my symptoms would go away or at least not progress into new ones but unforuantaly that didn't happen. One postive thing I can say is that I havent noticed any weakness yet, My left arm has never been as strong as my right but thats just because I use the right one so much more, so that really doesn't concern me. I might decide to call my neruo back to make an appointment although I am sure he will dismiss me due to my age and my clean EMG. So I think I just might have to play the wait and see game.
 

peanut78

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Hi Ashley,
I was just reading one of your old posts about your EMG at Raleigh Neuro. I had my done there as well and felt the same way. It was so quick! How could he tell? The only thing that makes me feel better about it is that the doctor that did it, Dr. Tim, who probably did yours too, was the director of the EMG laboratory at the VA Hospital in Durham. He was also the head of the MDA clinic at Duke. I think he probably knows what he's doing;-)
I hope this helps, although I do still have this fear in the back of my mind with the twitching. Have you had another EMG since your first?
 

boxer22

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Hi Ashley,
I was just reading one of your old posts about your EMG at Raleigh Neuro. I had my done there as well and felt the same way. It was so quick! How could he tell? The only thing that makes me feel better about it is that the doctor that did it, Dr. Tim, who probably did yours too, was the director of the EMG laboratory at the VA Hospital in Durham. He was also the head of the MDA clinic at Duke. I think he probably knows what he's doing;-)
I hope this helps, although I do still have this fear in the back of my mind with the twitching. Have you had another EMG since your first?


Hi, Yes Dr. Tim did mine as well. No, I havent had another EMG since. It was my only one and I swear I am not even sure that it was even 5 mintues that he did it. It was just so fast. He thought maybe that my caffine asumption was the cause for all of my twiches but I have tested that theory and it hasen't helped at all. Also a lot of my symptoms now like the bad cramps,drainge in throat,tremors, etc, I did not really have a lot of them then so he only basically commented on my twiches and brisk reflexes. I am thinking about calling the office and making an appointment.
Ashley
 

peanut78

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Yep! That's exactly how mine was. But I've heard from others that if it's fast, that's a good sign. If they see anything suspicious right off, they will keep looking, that's what makes them last longer. How may limbs did he do? I had one arm and leg. He didn't see any need to go further.

P.S. i also have tremors. shaky hands, etc.
 

boxer22

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Yep! That's exactly how mine was. But I've heard from others that if it's fast, that's a good sign. If they see anything suspicious right off, they will keep looking, that's what makes them last longer. How may limbs did he do? I had one arm and leg. He didn't see any need to go further.

P.S. i also have tremors. shaky hands, etc.

I had my right leg,thigh, foot and arm and hand done along with my back near or on my spine. Thats it. He didnt do the emg on my left side but i had the nerve study done on both sides.
Ashley
 

ltr

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That's a pretty extensive emg/ncv, more than any of mine. It had to have taken more time than you think, just to stick the needle in that many places! Maybe you had anxiety about the test and time flew by?!
 

boxer22

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That's a pretty extensive emg/ncv, more than any of mine. It had to have taken more time than you think, just to stick the needle in that many places! Maybe you had anxiety about the test and time flew by?!


I swear though it didnt, I mean maybe my stress had something to do with it but i really feel that it was over very quick. I am aware he's a doctor and knows what hes doing but I felt he was in such a rush. Another thing was the needle sticks, I was told that the Emg test was very painful and the needles going in really hurt, but I felt as though he barley stuck them in, and at times i was wondering if the needle was even in me because i didnt feel it. Is that just normal in some people? Maybe I am over thinking it but would have liked him to spend a little more time then he did with me.
Ashley
 

peanut78

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Ashley,
I felt the same way. But truthfully he is very experienced in doing EMGs and he knows what he's looking for.
Yours was very extensive. Why did he do so many places? Did you have anything other than fascics? And did they show up on the test? Mine did not. :confused:
I feel like I had to beg to get my leg done. They were only gonna do one arm! And the NCV bothered me more than the actual EMG. They don't have to stick the needles in very far to get a reading.
 

Lorie

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Ashley

I am where you are! No answers after the Neuro's and Specialist. Its like I told (scared of als) and my husband and brother ith ALS and others. I am not going back, unless something drastically happens. Unless its to my GP. She is wonderful.

I have cramped in my left foot and leg all day. Twitches, never ending. Still I just deal with it. I don't know how, I just do. Maybe its because I see what my brother is going through. Maybe I say to my self. If he can go through this, I can do anything. Fight the Obsticles.

I don't see the point in me going back. What difference is is going to make in the long run. I have had every test there is. I do know my MD is concerned, Tim (my brother and I both see her). She sees what he is going through and my symptoms. I will be seeing her soon for other reasons and update her on my latest.

I Want Stop Til I Drop!

Lorie:-D
 

CindyM

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I don't see the point in me going back. What difference is is going to make in the long run. I have had every test there is.

Thank you Lorie for the validation. I was beginning to think I was odd for tinking this way. Nice to know I am not alone!:-D Cindy
 

pldo

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Ashley

I have the same symptoms! It is like we are leading parallel lives with that. The twitches have amped up after having almost completely stopped for a while. I have constant cramps in my thighs and upper arms. I feel like I am falling apart.

I am calling another neuro tomorrow to set up an appointment. If nothing is found I too am not going back. I am sick of being called nuts, by doctors, friends, and especially family. I will not let this ruin my life no matter what IT IS (I wish I knew).

I know that I said that I was going to take a break for a while but I do read what everyone is going through and it makes me feel sad. I wish there was some magic cure that would end ALS, and whatever it is the rest of us undiagnosed have.
 
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