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MommaTeresa

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Well, my "diagnostic merry-go-round" thread was closed, but I did want to report back on my diagnostic journeys.

Just left a new neurologist who did EMG on my legs and said NO ALS! {exhale!}

He is referring me to Dr. Harati in Houston. He said that in my area, there is nobody to conduct and read a muscle biopsy or do testing for rare disorders and that I will probably also need a spinal tap, etc. He suspects possibly a mitochondria disorder or "a rare bird" and so is sending me to Houston with a referral to diagnose muscle cramping.

He stated that stress can cause cramps and spasms, however the more we talked the less he thought that was the issue. I asked him IF it were stress, how could I tease that out? What could I do to determine that? His answer: Go to Houston.

Thanks to all who were so helpful to me. Forgive me for even being a DIHALS-er! :)

To those wondering if you have ALS, I promise you the only way to find out is to see a neurologist, or two, and have testing. I had a lot of symptoms that you can read on my previous post ("on the diagnostic merry-go-round") and NO ALS.
Just sayin'...
 
Thank you for the update. I hope you find an answer that is treatable. No ALS is great news though. Best of luck
 
Yeah! Glad that is isn't ALS. Wishing you the best of luck at your next appointment. Take care, Kim
 
Wonderful news! So happy for you.
 
Excellent news! My husband was just diagnosed on Thursday of last week. We still feel there is so much they haven't ruled out and we are hopeful it will be something other than his. Do you/have you had any weakness? My hubby's is only in his hands and it comes and goes. We are hoping that he also can attribute some symptoms to anxiety. Your story gives me hope that my young children (5, 2.5 and 3 months) won't have their childhood defined by this horrific disease. Thank you for sharing and best of luck!
 
What wonderful news--I'm so happy for you! I do hope you find an answer soon, and that it's quickly treatable. What a gift to be able to move on from ALS.
 
I have to attend to this post for just a bit, as I am basking in the news and so touched by the "hoorays" from the PALS and CALS. (Actually, googling the doc in houston sent me BACK to this forum for info!---so I peeked at this post!). Thanks so much ya'll! I just adore you!

mkboreson: I am so sorry you are going through this with your husband. Yes, I have weakness in my hands and ankle (they completely give out) but the severity is dependent on use. I am less able to do things with my hands, so they "feel" weak and clumsy to me, but clinical weakness was only noted in my right thumb (which is weird, cuz the left one seems worse to me) as well as reduced grip strength in both hands. He didn't see the ankle weakness occur, so that's just me saying it happens. But the EMG cleared the question of ALS. So, I'm hoping muscle biopsy and/or spinal tap will point us in the right direction. I'm assuming your husband had a bad EMG? How about biopsy or spinal tap---Did your husband those? Has he had a second opinion? I do so hope you find another answer. Either way, you are in the right place here.
 
I just love it when another good person finds that it is NOT ALS!

Jim
 
MommaTeresa,
Thank you for responding back. Your symptoms sound similar to my husbands. Your story is making me feel so much more confident in our decision to seek a second opinion. We are going to the Mayo Clinic in June. He has been having weakness in his hands for two years and recently has been having balance problems with his legs. He also has some fasciculations which started in his arms after his first EMG last June. He has had 3 EMG's. Two of them have come back clear and the last one showed 1 or 2 abnormalities, but they told us they weren't "indicative" of ALS. His doctor said he is still "fairly certain" he is in the beginning stages of ALS. We are praying that he is wrong. I'm so happy for you!
 
Wonderful news. So glad for you. Thanks for remembering us, we love hearing good news like this!
 
I just love it when another good person finds that it is NOT ALS!

Ditto what Jim said!

Hope the cause and the cure for it are quick in coming.
The best to you!
 
Any updates? Just thinking about you..... :)
 
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