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DFWMommy

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Apr 7, 2009
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Learn about ALS
Country
US
State
TX
City
Dallas
Hello. I am new here. I went to the doctor yesterday after months of twitching/cramping because I had noticed some weakness (no atrophy that I can tell). I nearly hit the floor when the doctor said he was thinking maybe ALS. I lost my aunt to ALS a few years back, so I had been trying to keep my mind from going that direction. But here I am, waiting on test results and a neurologist appointment. I'm trying to keep my head straight, but I'm finding it hard not to obsess and go to Google School of Medicine too often. I'm glad to have found a place where other understand what it is like to go through the diagnosis dance. Nice to meet you all.
 
Welcome DFW. Sorry you have had to come looking for us. I hope we can be of some help in support and information.

AL
 
DFW,

Please hang in there.... I really believe it was insensitive of your family dr to say it could be ALS without any test results or you even seeing a nuero. There are so many things that could cause your symptoms.
 
DFW, I agree with Crystal. How could your doctor go there? So many other things can explain your symptoms...just ask any of the undiagnosed lingering on this forum! My first neuro did the same thing, but not to me directly (thank goodness), but in her letter to my GP. He was at least sensitive enough to spare me that detail of her speculation (but hemmed and hawwed so much I was immediately suspicious and got her notes myself....Big Mistake). I also had/have twitches, nasty widespread cramping, and so-called "clinical" weakness, but no MND. Try to keep it together until your appointment!

Take care,

Lydia
 
dfw,

I agree with what everyone else has said. Please wait to see a neuro. AND, I would schedule an appt with and als specialist not a regular neuro. The als docs know about other things that are not als as well.

I have alot of stange sx as well, that can seem the same as MND but have been ruled out for now. Did you ask your doctor why he thought or said that? how were your reflexes? Maybe he jumped there because the family history?

Try not to stress, but I know you will (lord, knows I would), Who wouldnt hearing that. I think that it is very wrong to go there and now you have to have this worry on you while waiting!

Hang in there and now that there are people here for you...

~april
 
Thank you all for the kind welcome! I'm trying to keep it together for my family, so it feels good to just be honest about being worried.

April -- I wondered if it was the family history that made him pick up on ALS. He did not check my reflexes at the appointment. I just listed my symptoms, and he told me maybe ALS. I had an MRI today, and called to get a copy under HIPPA. Unfortunately it is all jibberish to me.

Thanks again for the welcome.
 
Without a good clincial exam, Hello they would have not a clue anyway. Did you have other family member's? other than your Aunt with als? If just your aunt that should mean nothing, but like April stated the Doc could have jumped to ALS with the symptoms and if he or she was familiar with your aunt. Please do not worry, try to relax. We all have so much in common on this forum, we all understand how you are feeling. We all have had ALS interfere with our live's in one way or the other.. We will be here whatever the outcome be.
 
Hi DFW...sorry you have to be here. No one wants to here those three letters "ALS". It's hard 'not' to worry, when doctors throw out their opinions.

It can be a long road til you actually find out what's going on. Hopefully, nothing too serious. Until then, so many people give wonderful advice. This is a great group of caring people, (those with MND) for the undiagnosed. They are a patient bunch!
 
DFW PLEASE don't worry. Your doc had no business saying that to you. The doc ain't no neurologist. I went through weeks of this and today got tested and voila, according to the neuro I do not have ALS. I got a diagnostic series of tests and then a nerve reaction test and a muscle reaction test, a EMG. I do have something all right. She is doing an MRI for MS just to cover all bases though she thinks that won't be the cause of my symptoms either. She thinks it's viral and is doing a lot of bloodwork on me. I had/have the weakness, cramping, fatigue stuff first on one side and then on my whole body. Not fun; still lsn't but I am not so freaked out now. PLEASE TRY NOT TO BE either.
 
DFW,
My welcome to you also. And, everyone's right on target-that dr had no right to say something like that to you. Make sure you get an appt with a neuro, enjoy your life as per usual. I'm sure it's crazy in your mind right now, but hopefully, you'll get better answers from a neuro. That's what we'll be praying for!
Take good care,
brenda
 
hi DFW:D
welcome to the forum.
same as everyone else has said,its early days as you have so many tests and a proper neuro exam to have first before speculations of als are sugested.
hang in there.
 
Your GP (and in your case it should stand for "General Putz") should be beaten to within an inch of his life for even suggesting such a thing. Your symptoms can be explained by a gazillion things other than ALS. Get to a competent neuro and let him/her determine what is causing your symptoms. Given what you have shared so far, I don't think you should be panicking and I doubt you would be if Dr. Idiot hadn't brought-up ALS. Do your best to relax and please stay off of the internet because it will do nothing more than feed your anxiety. Take care.
 
Agreement here that your doctor had no business going to ALS without tests. When you go to your future appointments remember to take someone with you. It is good to have support to remember all the doctor is saying. If the news is not so good you have support and if it is good news you have someone to celebrate with.

Sharonca
 
Hmmmm...you read my mind Wright! Well said!
It is time for some deep breaths DFW....do try and relax...and we all know that is more easily said than done!
Our thoughts are wil you!
Rick & Joan
 
I can't tell you how appreciative I am for your replies. I find them very reassuring. Actually, I have reread them several times because it helps me keep perspective. I have an appointment with a neurologist tomorrow morning, so I'm trying to stay distracted until then.

Tim -- I'm so glad you got the no ALS result. I can imagine the relief! Here is to hoping that you find something that is a quick fix in the blood work.

Sharonca -- My husband is going to be with me from now on. I would have insisted that he be there Monday if I would have thought the appointment would go like it did. He is also more assertive than I am, so he seems to get farther with people than I do.
 
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