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Mjschance

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Joined
Jul 30, 2016
Messages
6
Reason
PALS
Diagnosis
07/2016
Country
Us
State
Colorado
City
Colorado Springs
Thank you for taking the time of reading this and replying with your knowledge.

To start it was roughly 20 months ago I noticed a twitch in my left bicep didn't think much of it at the time I was working out and then my shoulder I have had pain in for some time started up again and I had a tingling feeling in my forearm. Along with the tingling i had hand atrophy and lost a lot of muscle in my left hand. Around Dec 2015 I got in and had my PC say don't think about ALS. Fast forward to June 2016 my hand seems to be getting bigger well I know it is my wedding ring fits normal again, had two neurologists say my age (26) and that I still have significant strength in my left hand the believed it to be MMN. July 26 2016 I had my EMG the Dr I had said you have weakness in arm and hand along with a positive Hoffmans reflex along with the nerve damage I'm diagnosing you with ALS. The very next day on July 27th a different neurologist said no I do not have positive reflex symptoms or weakness in my arm or hand only slightly in wrist. Wants to do another emg at the end of Aug. I don't have any symptoms other than twitching and cramping twitching all day all over body and cramping comes and goes very quickly. No weakness or muscle loss in right arm or legs or mouth. Just need some help understanding this and why 1 neuron out of the 4 I saw says something different than the other 3
 

laurel

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Joined
Jul 19, 2007
Messages
1,431
Reason
DX UMND/PLS
Diagnosis
07/2007
Country
CA
State
BC
City
Vancouver
My husband has CIDP (a neuromuscular disorder that mimicks ALS). It is pretty common for neurologists to come to varying conclusions in our experience. We only got to "the" correct answer by going to the Neuromuscular Disorder Clinic at the top rated hospital in our Province. Well worth going to the best specialist in the field to get answers. If you have MMN, you will likely need treatment to prevent deterioration so getting a proper diagnosis is very important. We didn't do this and as a consequence my husband had no treatment and deteriorated significantly with major muscle atrophy in his right arm and leg before getting treatment. This cost him his career as an airline pilot and he remains very disappointed in the medical system--thinking he should have be referred to the top specialists right at the beginning instead of them spinning their wheels. To be fair to the neurologists this diseases are very complex and not easy to dx in the early stages. Good luck.
 

GregK

Moderator emeritus
Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
US
State
CO
City
Colorado Springs
Have you seen Dr Ringel in Denver?
 

Mjschance

New member
Joined
Jul 30, 2016
Messages
6
Reason
PALS
Diagnosis
07/2016
Country
Us
State
Colorado
City
Colorado Springs
No the VA had me see Dr Sohi and she's the one who said I had ALS but the other 3 said that through the clinical they highly doubt it. So I'm here at the CS Neuro
 

GregK

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Joined
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Messages
2,775
Reason
PALS
Diagnosis
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Country
US
State
CO
City
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Dr Ringel is the "grey beard" expert for this region, he's at the University Hospital.

I initially saw Dr Kohemini (sp) at cs neuro; she sent me to Dr R.

Go with the repeat EMG but check the direct ALS experience of your neuros. I'd say try to get referred to Dr R, but I do not know how experience your current neuros are.

Sadly, some folks are stuck trying to get a Dx for years...
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,715
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
It does not seem you have seen a neuromuscular specialist. It is critical that you do, especially with MMN in the differential. As Laurel says delay in treatment can cause permanent harm if it is MMN.

I would be calling Dr Ringel and telling them MMN is the opinion of two neurologists. They should see you soon- very soon

I looked up the doctor who told you ALS. Her specialty is rehab medicine Not neuromuscular disease
 

Mjschance

New member
Joined
Jul 30, 2016
Messages
6
Reason
PALS
Diagnosis
07/2016
Country
Us
State
Colorado
City
Colorado Springs
Thank you for your responses yeah my next emg is with a specialist in neuromuscular disorders so I'm hoping for a very different outcome with this being almost 21 months and not progressing at all at least none that I noticed
 

GregK

Moderator emeritus
Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
US
State
CO
City
Colorado Springs
You mentioned va (I am a vet, too, and in the va ALS group) but if you're using private healthcare also, you can push for Dr R.

Fwiw, the CO VA group is good.
 

Mjschance

New member
Joined
Jul 30, 2016
Messages
6
Reason
PALS
Diagnosis
07/2016
Country
Us
State
Colorado
City
Colorado Springs
Thanks I appreciate this its just a shock been a dream since the 26th
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,340
Reason
DX MND
Diagnosis
07/2014
Country
US
State
CO
City
Vail
I can also recommend Dr. Ringel. I encourage you to do whatever it takes to visit with him.

Steve
 

Mjschance

New member
Joined
Jul 30, 2016
Messages
6
Reason
PALS
Diagnosis
07/2016
Country
Us
State
Colorado
City
Colorado Springs
Yeah I tried asking her questions about how I was able to get stronger at the gym and still go up in my weight and she left the room for my wife and I to be alone. How am I making my arms bigger as well as my shoulder strength.
 

GregK

Moderator emeritus
Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
US
State
CO
City
Colorado Springs
We have another member from Pueblo.
Her husband saw Dr R and she was happy with him.
 

Mjschance

New member
Joined
Jul 30, 2016
Messages
6
Reason
PALS
Diagnosis
07/2016
Country
Us
State
Colorado
City
Colorado Springs
I'm going to try to get an appointment with him thank you
 

Shawnlee

Active member
Joined
Feb 17, 2016
Messages
33
Reason
Loved one DX
Diagnosis
09/2015
Country
US
State
Colorado
City
Holly
My husband saw dr. Ringel. Dr. Sunku in Pueblo sent him to UC for a second opinion. Both Dr. Sunku and Dr. Ringel are highly recommended by us. It took 10 years for a Rx. Fortunately my husband has a slow progressive form of ALS.
Try to get into Dr. Rangel he will be very thorough.
 
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