very nervous

[happy]

jattd

My symptoms started with neck and shoulder pain. that radiated down my left arm..unbearable. Burning tingling, numbness. Then over the months, 7 months to be exact, I began to have atrophy in my left hand and arm I could not button things, zip or use my hand for fine motor skills. I was slurring speech, severe fatigue, aching all over my body, shacking on the inside, clenched jaw, shortness of breath, my walk was affected in that I had to plop feet rather than set my foot down.
Also a biggie for me ....I could not think straight. Eyesight was weird too. All of my symptoms, the latter, would come and go. Some days worse than others. Depression too for me was a biggie. I am a recovering alcoholic and because of the fear I began to drink again, not good! I had no support at home,,,my family thought I was making it all up from reading the internet. It was horrible. But...beacuse of the influences on this forum...I made a decision that I would not give in to horrible depression.

I checked myself in to rehab with all my symptoms, and tried to accept my fate the best way I could, for my kids sake. It is really hard to be sick and to think positivily...but you have to. I listened to what Wright said and told my neuro about Parsonage Turner syndrom and that is what is pending now for me. There is no cure, but it is not terminal.

I still have all my symptoms but I work on my attitude daily. I am working on learning to live with my new body. I am not the same person able to do the things I used to do, it's hard. But, I try to cope the best I can. I do not think you have als based on what you have described. Remember, stress and focusing on your body will only make it worse. Not knowing is the hardest part..hang in there. Listen to Captian Al he speaks from a ton of experience so do the others on this site...take what all these friends have to say to heart, this is how you will get to the next step sucessfully I promise.

Robin

 

[MtPockets]

Just wanted to say Robin, I am so proud of you. You go girl.

 

[jattd]

Please Help Me!

I do have terrible joint pain in my shoulder back ribs and knees also my muscles hurt to the touch And achea all the time. This is not normal I don't really have weakness my arms and legs do get very tired though. Does this good to you I doubt it. And does a normal emg nvc mean you don't have als every freakin part of my body twitches. Please help me I'm on the verge of just ending it all now so I don't have to suffer and put my family through this

 

[jattd]

wright

I respect your insight and it seems you know a lot but whst msked it so hsrd for you to believe that this I'd a possability. I have read post on heart about als people with tigling and burning pain and wide spread muscle twitching. Also can you answer my question about a normal emg and nvc meaning you can't have als. Please explain to me why its so hard for anyone including my family to believe me. I want to live and this is killing me my dam shoulder hurts just from typing this. I'm a young mother with two beautiful children and a wonderful husband I need to be here. I can't take going to dr after dr I can't live like this anymore. I'm actually scared for my kids to be home for the summer I can barely take cre ofthem now my 3 year old who is in a special school he has learning delays and autistic characteristics is home by 11:30 and my other son is in kindergarten. In another moth they will both be home all day and I have no family or friends here in kay my closest family is 1,642 miles away. I'm so scared of this I just feel they are better off without me. I'm sorry I don't know what else to say I am rambling out of fear.

 

[wright]

I can't sit here with 100% confidence and tell you that you don't have ALS . . . that is something your neuro has to do. However, given your history and symptoms, it just doesn't fit. You also said you had a clean emg: that points away from ALS, especially if you have had symptoms for nearly two years; something would show-up on the emg in that time frame.
As far as those PALS with burning pain: my guess is that those symptoms occurred later on in the course of their disease . . . which is a possibility due to loss of muscle mass and edema, which can irritate sensory nerves and cause that type of pain . . . but it is a very rare symptom and is secondary to the etiology of ALS . . . not primary.
I hope that helps calm your fears a bit.

 

[happy]

Thanks Capt AL, that means a lot coming from you!

 

[patricia1]

I can't sit here with 100% confidence and tell you that you don't have ALS . . . that is something your neuro has to do. However, given your history and symptoms, it just doesn't fit. You also said you had a clean emg: that points away from ALS, especially if you have had symptoms for nearly two years; something would show-up on the emg in that time frame.
As far as those PALS with burning pain: my guess is that those symptoms occurred later on in the course of their disease . . . which is a possibility due to loss of muscle mass and edema, which can irritate sensory nerves and cause that type of pain . . . but it is a very rare symptom and is secondary to the etiology of ALS . . . not primary.
I hope that helps calm your fears a bit.

I had neg Emgs for three years and I had slurred speech ,so that is incorrect information.Thats why it took 5 years and 6 neuros before I was Dx. Emg cannot rule out ALS.There is no test for ALS its pocess of elimination!

 

[wright]

Her symptoms are indicative of lower motor symptoms, which should show-up on an EMG, which is why it simply didn't make sense.
Weren't your initial symptoms upper motor neuron symptoms, Pat? If they were, the EMG would most certainly be clean.

 

[olly]

vtway

i have not heard from jattd for quite a while now and hope she is ok. we tried to help her the best way we could. if you send her a private message it should go through to her email so she will get it without logging onto the forum. i think i will send her one anyway just to see if shes ok.
take care
caroline:-D