Just Returned From The Mda/als Clinic

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KANSASTOM

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Here's an update for those of you who are following my saga. I just retuned from the MDA/ALS clinic. I saw an RN, Respitory Therapist, an Occupational therapist and the ALS Dr all this morning. The ALS Dr. does not believe I have ALS, my reflexes were normal to diminished and 60% strength on my both my ankles. I did have some weakness when trying to pull up my legs. Everything else was 100%. So instead of the MDA /ALS clinic they are going to switch me to the regular MD side and are leaning towards SMA or a type 2 CMT. The occupational therapist said I had classic CMT feet. I am very cautiously optimistic, once again I will continue to live as if I don't have ALS until something else comes up. Thanks everyone for your previous input. I am not sure I spelled "respitory" correctly.
 

CindyM

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Good for you, Tom. As Wright always says, make them prove it to us that we have ALS. You will go far with that attitude! Cindy
 

crystalkk

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Tom,

That's great news! I am so happy for you, see what a second opinion does...
Have a great weekend !
 

BethU

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Yesssssssss! That is great news. I am really happy for you ...
 

rose

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That is such great news! It sounds like you saw people that were really on top of things, and understand the subtle differences to look for. Cheers :smile:
 

KANSASTOM

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Yes the second opinion is very important, I am glad I went through with the appointment.
 

awieleba

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I am sooo happy for you that you are getting closer to your answers. I felt that it was something else or gentic because of your father & grandfather. I am just so gland that you are on your way.......please keep us informed of yourself and all that you learn

Take care

april
 

RR15

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I am very happy for you Tom. I wish you all the best.
 

ptich

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Tom, could you please translate what CMT, MDA, and SMA mean ? It is hard to remember all the abbreviations. And, of course, congatulations on the good news !
 

KANSASTOM

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MDA is the Muscular Dystrophy Association and CMT is Charcot Marie Tooth and SMA is Spinal Muscular Atrophy. My Dr sent me to the MDA because of my symptoms and EMG indicating some sort of neuromuscular disease and the MDA deals with all of the above.
 

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I hope you find your answers, and i am so happy for you. Sam
 

L4dybugg

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That is great news Tom.

My hubby is waiting to go to his first MDA/ALS appointment, It should be some time around Nov. (oh the waiting, LOL) and we are hoping that we will get great news also.

I wanted to ask you, what kind of tests did you have done, prier to going to your first MDA/ALS dr? And did you have a muscle biopsy done?
 
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KANSASTOM

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My testing started last February and included two catscans, three MRI's, two blood test, one was a genetic test for CMT (came back inconclusive). Two EMGs and two NCV's a appointment with a spine specialist due to a herniated disc and two bulging disc, MRI's also revealed spinal stenosis, and a partridge in a pear tree. A appointment with a neurologists, standard exam checked reflexes and walk on heels and toes test. And then to the MDA/ALS clinic they by far were the best. It was a multidisciplinary team which evaluated me and started my functional baseline tests.
 

KANSASTOM

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L4dybugg,
I also have very high trigylcerids and abnormal livers enzymes I am not sure if it related to anything but I did have a liver biopsy because at one time they thought I might have had Wilson's Disease. I hope and pray for the best for you and your husband, never accept the first opinion.
 

L4dybugg

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Thanks Tom. I wish you well.

My husbands Liver enzymes are high also. They keep checking it, and it always comes back real high. One time his muscle enzymes was also high, but at the last check, that was down. I don't think they know where that is coming from.

My husband had a first cousin that had ALS, and his liver enzymes stayed high as well. But I don't know if it is related though.

Take care
 
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