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lhagsjr

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Listen, It a good thing that people tell me I dont have ALS. Believe me, it beats the alternative. But, I still dont have a good answer for what other disease causes twitching AND atrophy. I 100% have both of these symptoms and the atrophy is progressing. Can somebody give me a disease to hope for other then ALS>
 

laurel

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Listen, It a good thing that people tell me I dont have ALS. Believe me, it beats the alternative. But, I still dont have a good answer for what other disease causes twitching AND atrophy. I 100% have both of these symptoms and the atrophy is progressing. Can somebody give me a disease to hope for other then ALS>

My husband has CIDP, and was diagnosed due to atrophy of right hand and he had fasciculations in that arm. Husband's atrophy progressed over a five year period. He was diagnosed with carpal tunnel and had two surgeries with the atrophy continuing. Just prior to being diagnosed with CIDP, his other three limbs became affected as well. Currently he is improving on monthly IVIG.
Laurel
 

crystalkk

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Lou,

Are you getting any weakness with the atrophy?
Have you been to any other doctors since Dr. Dalakas?
 

lhagsjr

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Drs

Dr Lee Harris(Abington Neurology)
Dr. Leo McCluskey(University of Pennsylvania- Certified ALS Center)
Dr. Marinos Dalakas(Director Neuromuscular Division of Thomas Jefferson Hospital Neurology)

The weakness question is a tough one...

What is CIDP?
 

crystalkk

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lou,

If you are atrophing and there is no weakness that is a very good sign.
Are you in any pain?
 

laurel

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Dr Lee Harris(Abington Neurology)
Dr. Leo McCluskey(University of Pennsylvania- Certified ALS Center)
Dr. Marinos Dalakas(Director Neuromuscular Division of Thomas Jefferson Hospital Neurology)

The weakness question is a tough one...

What is CIDP?

It is a peripheral nerve disease. Just google CIDP and you will find lots. Hubby had major wasting, atrophy of his right hand and inability to even hold a coffee cup in that hand prior to treatment with IVIG. Now his grip and strength are returning, but I believe the muscle wasting may be permanent due to the extent of damage prior to getting a proper diagnosis.
Laurel
 

lhagsjr

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Laurel

Does your husband have problems with his joints? pain?
 

MtPockets

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I thank God that your CIDP was treatable. What a blessing.
They had Dx me with ALS on May 11, 2006, and then a 2nd opinion said possible CIDP, then 2 months later I was back to ALS DX. See this thread if you want more info: https://www.alsforums.com/forum/showthread.php?t=4824

I would have loved for it to have been CIDP. At least that is treatable.

That is why I recommend everyone get a 2nd and 3rd opinion. Don't settle for the first thing they tell you may have.
After all they are just "Practicing" Doctors. :)

Maybe we should call them best guess Docs?
 

laurel

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Does your husband have problems with his joints? pain?

He experiences some muscle cramps or spasms in the large muscles of his thighs. He has had some knee pain, but hard to know if that is really related to CIDP. He has lots of fatigue, tires easily on exertion, experiences set backs in re-gained hand strength if he over does it. Also, will have a relapse after spiking a high fever.
Laurel
 

laurel

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I thank God that your CIDP was treatable. What a blessing.
They had Dx me with ALS on May 11, 2006, and then a 2nd opinion said possible CIDP, then 2 months later I was back to ALS DX. See this thread if you want more info: https://www.alsforums.com/forum/showthread.php?t=4824

I would have loved for it to have been CIDP. At least that is treatable.

That is why I recommend everyone get a 2nd and 3rd opinion. Don't settle for the first thing they tell you may have.
After all they are just "Practicing" Doctors. :)

Maybe we should call them best guess Docs?
Hi Capt. Al,
I did follow the thread where you had a brief glimmer of hope that you had CIDP, and I was praying that it was CIDP. These diseases are so hard to diagnose. I still have my moments of gut wrenching anxiety with my husband. i.e. he will experience hoarse weak voice and I think oh no it's ALS and not really CIDP. But for him the really positive thing leading strongly toward CIDP is his very good response to IVIG. He did have a differential diagnosis of ALS in the beginning. God Bless you Capt. Al. I often think about you and say prayers.
Laurel
 

MtPockets

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Thank you so much for the prayers and kind words. Also thanks to all the other forum members who have prayed and shared their lives with me. No words can ever repay your kind thoughts and words.

Here is a small hug for you all.
 
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