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Amyotrophic Lateral Sclerosis (ALS) Message Board


Amyotrophic Lateral Sclerosis (ALS) Board Index


Hello all....
My husband of 5 years and partner of 10 was diagnosed yesterday at UCH in Denver. We are in utter shock right now. We just had our third baby in January and our other children are 2.5 and 5. My husband is only 35 years old and he is crushed with this diagnosis. I guess my question centers around "how" he was diagnosed. I know there is no real test to definitively confirm ALS, So I just reaching out for support.

Our back story, about 18 months ago, he started noticing that his hands having some basic weakness or aching in his knuckles, especially. We went to Mexico in Feb. 2014 for a wedding and he came back physically sick from there. He couldn't walk and was so sick, I took him to the Urgent Care, ER and his PCP within a week. He was diagnosed with Vertigo at Urgent Care and given shots. That didn't help and he was diagnosed with an inner ear infection at the ER and his CT scan of the head came back clear. His PCP told us it was a viral infection from Mexico that his body was having trouble fighting and she put him on a z-pack and antihistamines. I feel this is CRITICAL to when his symptoms started worsening. His hands, could have been arthritis up to this point, in my opinion. After that, he never felt right. He went back to his PCP and she sent him for an EMG, which came back clear. That was June 2014. He went to see a surgeon about carpal tunnel in July, which was ruled out. In the meantime, he started having continual spasms, which increased after the EMG. Nothing got better and she kept suggesting he had Anxiety and to take Symbalta. He never did. In October she sent him for an MRI to rule out a pinched nerve. That came back clear. In November, he went to help break up a fight at school (he's a teacher) and he said he felt a "fight or flight" sensation in his legs. He said they haven't really been the same since. He switched PCP's in December and his new doc ran blood work, which came back with elevated CK levels. He went back for a recheck, a week later, and they were within normal range. In late December, early January his speech starting to be noticeably slurred. He went for another EMG in March, which again came back normal. We tried to get in to see a neurologist in our hometown, but it was going to take 8 weeks. Over Easter weekend, he was admitted to the hospital because he fell twice in one day and I dragged him in. CT's, MRI (with and without contrast), blood work, EEG all came back normal. We were referred to Univ. of Colorado Hospital and that's where we got the diagnosis.

My question is, and I realize this is part of my grieving process, could it be something else? I was a little taken aback by the way he told us yesterday and how he is "fairly certain" it is ALS, but unwilling to entertain the thought that it could be something else. I have scoured the internet and found things like Isaac's Syndrome and MMN, that it "could" be, but he was unwilling to listen. He visited with us for a while, did a neurological exam and then came in and told him he has ALS. He invited us back to have another EMG in the afternoon to confirm. The Neuro that did the EMG said there were a few abnormalities, but that it wasn't definitive ALS. Our Doc came back in and said he is still "certain" it is ALS. I asked him what else it could be, and he said, "Nothing right now..." What does that even mean? I also asked him about a muscle biopsy and/spinal tap and he said they weren't needed? How were your significant others/your individual diagnosis gone about?

We are going to seek a second opinion, hopefully at the Mayo Clinic. Also, going back to the initial diagnosis of anxiety, could he have worked himself up so much that his symptoms might be mimicking ALS? I know that we are grasping at straws, but as I sat with my 2 month daughter on my lap, watching the strongest man I know be crushed, I don't know how we can't be in search of a different answer. Any insight, thoughts or prayers are greatly appreciated. If nothing else, thank you for reading.

Thank you....





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