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dldugan

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Luther, let the group know what the EMG suggests. While I am new to the forum, I have found the members helpful and continuous conversation about ALS without a diagnosis will only increase your anxiety. In the unlikely event you are diagnosed with ALS this group will give you a lot of good suggestions. Karen has given you good advice.
 

LUTHER

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Ok, Thank you Karen.
 

LUTHER

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Dildugan, You are correct. I guess it’s because I had to fight so hard to get the test done that I have had and I’m wearing down so rapidly, that I’m just getting more anxious for a diagnosis so that a lot of things can be answered. But everyone here has been of tremendous help. It could seem like I’m trying to wrestle with the doctors to see it my way, but I really want them to have more of a sense of urgency, and I guess I need to be patient, and just place my faith in the Lord, and see what happens. Monday is the day!
 

Bestfriends14

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Luther,

I am not sure what is going on with you, but ALS does not present the way you are describing. In searching for a diagnosis, having doctors see it "your way", is not always helpful. It seems, from what you have written, they have been extremely diligent in ordering tests and trying their best to find out what is going on.

As to your question on how to assemble a team of doctors and how to get in contact with an ALS centre to do so is jumping the gun by a long shot. If the results of your tests warrant it (which I do not think it will), all of that will be done for you.

Just an FYI, there was another individual on the DIHALS section that went to 5, nearly 6 pages, with the insistence that they had ALS. Well, they did not and this individual spent a lot of their time, and time of PALS and CALS with their constant posting and questions of a disease that they thankfully do not have.

Please come back and update once you have had your EMG. Until Monday...
 

KimT

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Luther, I'll pray for you. Please let us know what the doctor says.
 

LUTHER

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Finally at the Dr. Testing to begin. Be nice if I could believe that it isn't ALS. But you are right on. Karen, I believe it is. EMG starts now, I get results back Wednesday.
 

LUTHER

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Test concluded. Dr said He can assure me two things.
He doesn't know what is going on with me
And second is I definitely don't have ALS.

Have to see doctor Wednesday, will keep every one posted
 

Bestfriends14

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That's really great news. As thought, you do not have ALS and that is really fantastic.

Good luck to you on your diagnostic journey. Take good care.
 

Nikki J

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Best of luck in finding the answer. Please let us know once you do get a diagnosis

Congratulations and thanks for sharing
 

LUTHER

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I know I should be happy but I still feel something is wrong and that EMG is missing something.
I still have the symptoms and now my jaw and lip is numb and my ability to urinate is getting worse. I have read others getting a second EMG because symptoms persisted, I’m confused now more than before.
 

Bestfriends14

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Luther,

You've been cleared of ALS and you have a follow up appointment with your doctor tomorrow so you can ask him these types of questions. This is a forum for PALS and CALS, not random health questions.

Good luck to you. Take good care.
 

LUTHER

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I was in no means trying to be a problem or seeking random question. Had I not spoken to someone in this forum who had a clean EMG, but, still had clinical symptoms and after 60 test finally was diagnosed with ALS, I myself who continue to have clinical symptoms, even after a clean EMG, am only stating that I too will pursue further. But I’m sorry for the trouble I created and I will no longer post regardless of outcome. I thank all for what information and support I have already received.
 

Nikki J

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With the degree of weakness you report an EMG should have showed something. Certainly you need an answer and should pursue it with your doctors. I hope you will reconsider and return to share that answer. It is very helpful to future readers. I think if you review this thread you will see we have spent a good amount of time and energy addressing your concerns.
 

LUTHER

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Messages
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Learn about ALS
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Well the doctor sat me down and showed me the Emg results. Normal it read. Then he did a clinical pulling and having me walk and all the other test.
Results were that I had actually progressed from where I was previously when testing was ordered. Doctors said You don't get better, you get worse. Finally they tested my blood pressure as I stood up and began to shake. They found that I have dysautonomia. Which is a malfunction of the autonomic nervous system. Which controls the heart, lungs, bowels, swallowing, etc. Bottom line is I move onward to dealing with this disorder. I sincerely want to thank everyone for being so patient, helpful and compassionate. I'm sorry for any and all the trouble I may have caused. I will be praying for strength for everyone in your struggle, for the true love you show under and in the midst of your illness, is the greatest love I have been blessed to experience. God bless and thank you all.
 

Bestfriends14

Very helpful member
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I'm so very glad you found an answer and that you will soon be on the road to recovery. What a scary last few months you've had.

Thank you for updating.

Take good care and get well soon!
 
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