ALS Specialists In Denver - Next Steps

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mcdillydog

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Hello,

Does anyone have recommendations for an ALS specialists in Denver (or any part of Colorado). I had an MRI on Monday and I am awaiting blood test results as well. My Neuro said once he gets all this back he will give me a diagnosis BUT I should then go and get a second opinion regardless of what diagnosis I am given. I have a follow up appoinment with my Neuro on the 9th of February.

To whom should I go? I would appreciate any suggestions.

David
 

GGKK

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Hello David,

I was reading your previous post...did you go to your neurologist just because the twitches? Or you had another symptoms?

All the best for you,

GGKK
 

ktmj

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I think sdsyd saw a great neuromuscular specialist in CO. Might be remembering wrong, but you can ask her.

Be prepared for a wait though - the neuromuscular folks normally have a longer lead time for appts.
 

mcdillydog

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Twitches that are quite robust for lack of a better term and perceived (meaning perceived by me) weakness in my left hand and leg. Since that time the EMG/NC tests showed "diffuse chronic denervation" in arms, hand and leg and the sural nerve being "slow". The doctor said I did not have two wave forms that tend to show LMN issues. Since coming to this board and learning more about ALS I think he means I did not have Positive Waves or Fibrillations in the EMG. The EMG was on my left side only.

I have since learned that my great uncle on my father's side died of ALS so one of the blood tests I am waiting on is the familial ALS test.

I have requested the raw EMG data but I have not received it. Perhaps I can pick it up on the 9th at my next visit.
 

Al

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Try www.alsa.org and click In Your Community. They'll list the ALS Centers in the state.

AL.
 

planningguy

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Sdsyd saw Dr. Dianna Quan, who is the neuromuscular fellowship coordinator for the University of Colorado. She seemed really impressed with her. You might want to PM sdsyd for more information. As ktmj mentioned, she did say that it took quite a while to get in to see her.

Best of luck,

Robert
 

mcdillydog

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I do not have PM capabilities yet. I was told I had to wait until I achieved a certain number of posts.
 

mcdillydog

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What are reputation points. Did I do something wrong to get them?
 

jimmybob

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mcdillydog,

you exhibit the same fasiculations (twitches) i experienced. My EMG showed denervation also. ALS is a diagnosis of last resort, after ruling out other factors. I wish you well on the 9th, but take your spouse or a loved one with you.
 

mcdillydog

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Jimmybob - were you diagnosed with ALS?
 

mcdillydog

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Jimmybob I just read your profile. I know you were diagnosed in 2006. Please ignore my previous question.
 

danjay

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I saw Dr. Steven Ringel at the CU medical center. He was great, spent over an hour with me.
This was before my diagnosis and he gave me just the right balance of honesty and sensitivity.
Dan
 

Al

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mcdillydog you can PM now. Reputation info is in FAQ under User profile features.

AL.
 

sdsyd

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David-

Best of luck to you with your appts. in Colorado. I hope they find definite answers and that they are NOT ALS.

Love,
Cindy
 

crystalkk

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Cindy,

How did the spinal tap go? Did you get any results yet?
 
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