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KANSASTOM

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Tomorrow is my second appointment at the MDA clinic and almost one year since my diagnosis of ALS. I have not had any progression in a year, actually about two years, but a year since my official diagnosis.
As it now stands, I have had to emg's, upper and lower parts of my body and both have shown positive sharp waves and fibrillation potentials almost everywhere, usually the +1 type. On the lower left leg I have reduce interference pattern and increased MUP's, with polyphasic waves, this is where the atrophy is located. I do have a herniated disk and spinal stenosis confirmed with several MRI's in the lumbar region. No upper motor nueron involvement at this point with zero relexes at my left ankle. Atrophy of my left calf and the intrinsic muscles of my left foot. All of the above and I still believe I do not have ALS. I will post on this thread let everyone know how it tuns out. Oh, and I have the occasional twitch.
 

rose

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Tom, please let us know what they say... I remember you weren't that convinced it was ALS (how many of us really are?) I hope you come back with something positive, or atleast no more progression. Good luck!
 

crystalkk

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Good Luck tomorrow!
 

lovelily

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Hoping for a good news at your appointment!
 

planningguy

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Best of luck tomorrow. I'm hoping for some new insight for you given the lack of progression.

Robert
 

lydia

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Tom, that is amazing to have no progression to speak of in that length of time. Have you found in your time on this forum or elsewhere that any others have had a similar no-progression type of experience...is it "typical" to plateau for a year or more? Gosh, I hope not. I hope it is so atypical that it suggests something else, as it is clear you are also hoping!

Are you following Tag's story of her husband's diagnosed process?

Good luck at that appointment-

Lydia
 

KANSASTOM

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Yes, I have been following Tag's story. I feel his lower back condition is something that needs more attention and the fact that his condition improves with antibiotics is hopeful. I wish the best for him and his family.
 

tag0620

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Thanks Tom!

We're hoping for the best for you too!

I don't know which is worse..."only time will tell with no progression" or feeling like you're pushing dr's in a race against time if we're having more trouble but we may have an infection taking over.

Good luck at your appt
 

KANSASTOM

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I am back from my second appt with the MDA clinic, this was the third neurologists I have seen. I recieved the a full neurological exam from a neurologists with thirty years experince. The good news is that he told me it is definetely not ALS. That bad news is he feels it is possible a form of spinal muscular atrophy, but he really feels it is monomelic amyotrophy, not sure what that is yet. The Dr basically said it was a benign condition and if anything changes call them. So to summarize I have had all the tests (two dirty emg's) and have twitches and atrophy, all of these were suggestive of ALS, but I don't have it. The bottom line is time will tell and for now I am going to live life to the fullest. I hope they find a cure for this soon and I hope for the best for everyone. Never accept the first diagnosis, always seek multiple opinions and from experts in the field. Thanks for all of your help.
 

planningguy

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Tom,

Even though it is clouded a little by the SMA discussion: What great news!

Made my day :)

Robert
 

lydia

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Oh that is wonderful (with the caveat that SMA is no piece of cake)... but still how wonderful!

Tom, I am grinning from ear to ear as I am sure many others will as well when they read your news!

Lydia
 

lovelily

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Hello Tom...I don't know anything about 'SMA', but anything is better, albeit challenging, than 'ALS'.

Very hopeful news, indeed! :smile:
 

tag0620

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Great news Tom!

I'm still wishing the best for you with your new news with it's challenges...but the "definitely not als" news is so wonderful to hear!

Tracy
 

Zaphoon

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Tom,

When you mentioned you had no upper motor neuron involvement, I was asking myself, how in the world could he have been diagnosed with ALS? SMA surely fits the bill a lot closer and I'm glad that you found a neuro that could make the distinction.

Zaphoon
 
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