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Merepage

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Joined
Dec 26, 2012
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Learn about ALS
Country
US
State
PA
City
Center Valley
I have no diagnosis but slowly increasing weakness.. Last Emg in June clean...strength test last week with ALS dr fine, reflexes fine. I continue to twitch (9 mo) Headache everyday since Jan 2012 travels down left side of spine. MRI fine. All bloodwork fine including CPK. I asked my neurologist why I have heard it can take a year to diagnose ALS. She said it is because Drs don't want to tell the patient the bad news. She says emphatically that I don't have it but what else can this be? My arms are hard to lift but I can beat my friends arm wrestling. My 13 yr old hangs on my outstretched arms and I can hold them up. But I am more And more fatigued every day. Are there any stats on how long to diagnose ALS? Is 9 mo long enough to rule it out? How will this end? I'm tired.... Thanks for listening.
 
It is called acceptance, you have been cleared of als. Time to look for something else, chronic fatigue? I don't know I am not a dr. I wish you peace.
 
If your Doctor has said emphatically you don't have ALS, go with that answer! Enjoy your life! It takes a year as I understand because they first are ruling out every other possible option... in my case, I was tested for MS, MG, Lymes disease, you name it, I was tested for it! MRIS, CT scans, etc. etc. before the final emgs.
 
Im sorry for your diagnosis...I too have had every test which is why I keep coming back. I just want an answer. We're you told it wasn't ALS before it actually was? Clean or dirty EMG's? Thanks for responding
 
I find it interesting that your neurologist told you it's take so long for
A diagnosis because they don't want to tell patients the bad news. I had that feeling myself.

I've been tested for everything and my clinicals are NOT normal. I have to go back for 6 months checks now. 3 neuromuscular specialist later- everyone says no ALS or pls- go live my life. Good advice but its very hard to do when your body tells you something is wrong. I've had so many conflicting things said to me its doesn't surprise me I have aniexty now. (Sorry to vent)

I am not knowledgable in this stuff at all but if your clinical exams plus your EMG are normal
I think you should believe your doctor.

Hopefully you will find some relief and answers for your weakness.
 
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It has been a long road for sure. The twitching has really increased all over. Never twitched a day in my life until this started. We're your clinicals ever normal? I have believed my doctor for 9 months but continue to progress. Last night I woke to an "electrified" tongue. First time my tongue has had any issue. This path is just ridiculous. Without a diagnosis I have little/no support from anyone. I hope you find answers. I just hope my Neuro is right but still need to stop progression of whatever this is. Thanks for listening
 
I had hyper-reflexia noted for many years now. I progressed to other signs now too. You can read my previous threads.

I do understand how scary this is, I'm scared too. Given the information that you listed, I would believe your doctor.
I hope your find the answers, sometimes these things take time.
My best to you.
 
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