Hope091006
New member
- Joined
- Oct 3, 2013
- Messages
- 2
- Diagnosis
- 10/2013
- Country
- US
- State
- Ca
- City
- Sacramento
My husband was DX on October 2 with ALS, predominate lower motor damage. He is 33 years old and we have three babies. My heart is broken, shattered in a million pieces and I can't seem to pull myself together. Our children are ages 4, 2 and 1. I'm angry at the world. I am angry at GOD, I have lost all faith. I haven't slept for the last two days. I'm not strong enough for this and I am not 100% convinced that this is his fate.
I have pondered this board for quite some time, praying that we didn't have to join. You all are such inspirations up me.
My husband have no upper motor damage. I have questioned the neuros regarding any possible neuropathies. They all allege, without a conduction block.. It would rule out CIDP or MMN. I joined MMN groups and have found that many of them do not have a conduction block or tested positive(blood work) but since MMN and PMA was so similar, their neuro decided that IVIG would determine if they indeed did have a neuropathy or ALS/PMA and gave them that fighting chance.
Our story started in the end of Feb of this year. My husband took a big fall in the snow while taking out the garbage. After that, he started feeling numbness and weakness in his hand. We thought it was carpal tunnel. He briefly mentioned to me that his fingers felt weak. We dismissed it. My husband travels a lot for work. Near the end of May, he realized he couldn't lift his suitcase into the airplane overhead compartment. This alarmed him and we contacted the DR and an MRI was done in June. The MRI was normal but during our DR visit, the DR noticed fasciculation on his arms and referred us to a neurologist. We saw the neurologist a week later who DX him with ulnar neuropathy and scheduled an EMG two weeks later and told us not to worry about ALS.
Another neuro performed the EMG. This freakin DR told my husband that he most likely had ALS. We were devastated and have been living a nightmare since. They wanted us to see a neuromuscular specialist to confirm the DX. We didn't. We didn't feel there was a need to. At this time, the first neuro we seen and the neuro that performed the EMG were not in agreement.
Time passed and my husband has gotten much weaker. His weakness is now in all four limbs. We finally saw the neuromuscular specialist this past Wednesday. After another EMG, he DX my husband with ALS, predominate lower motor damage. He indicated that my husband did not fit the "classical" picture of ALS but that his Weakness and rapid progression does. He still has no upper motor damage. My question is... If his progression is this rapid, wouldn't he have upper motor damage as well? The neuromuscular specialist said no neuropathy since no conduction block was found and his progression was too rapid for PMA. He welcomed us to go for another opinion, this time with an ALS Specialist. We are waiting for that referral..
My brain is in a fog. Just a week ago with the local neurologist, he still indicated to us that it could possibly be a neuropathy since there is no upper motor damage and this week, we have a DX of ALS. I have researched and researched that it is not necessarily true. I am looking for anything other than ALS. Can someone please tell me about fasciculation? Does it get worst? More? His is still pretty confined to his arms.
We are constricted to Kaiser Permanente DRs, due to our ins carrier. Come open enrollment, I am changing health plans and hoping to go to Mayo Clinic. I feel like they are missing something...
Thank you for reading. I look forward to any advice. I love my husband so much, I can't accept this DX because I don't feel right about it.
Also, does ALS cause soreness? My husband is so sore, sore to the touch. I asked the neuro about his symptoms like soreness, cramps, some numbness. He stated that muscles are dying, therefore soreness is apparent. These neurologist that we seen have no empathy....
I have pondered this board for quite some time, praying that we didn't have to join. You all are such inspirations up me.
My husband have no upper motor damage. I have questioned the neuros regarding any possible neuropathies. They all allege, without a conduction block.. It would rule out CIDP or MMN. I joined MMN groups and have found that many of them do not have a conduction block or tested positive(blood work) but since MMN and PMA was so similar, their neuro decided that IVIG would determine if they indeed did have a neuropathy or ALS/PMA and gave them that fighting chance.
Our story started in the end of Feb of this year. My husband took a big fall in the snow while taking out the garbage. After that, he started feeling numbness and weakness in his hand. We thought it was carpal tunnel. He briefly mentioned to me that his fingers felt weak. We dismissed it. My husband travels a lot for work. Near the end of May, he realized he couldn't lift his suitcase into the airplane overhead compartment. This alarmed him and we contacted the DR and an MRI was done in June. The MRI was normal but during our DR visit, the DR noticed fasciculation on his arms and referred us to a neurologist. We saw the neurologist a week later who DX him with ulnar neuropathy and scheduled an EMG two weeks later and told us not to worry about ALS.
Another neuro performed the EMG. This freakin DR told my husband that he most likely had ALS. We were devastated and have been living a nightmare since. They wanted us to see a neuromuscular specialist to confirm the DX. We didn't. We didn't feel there was a need to. At this time, the first neuro we seen and the neuro that performed the EMG were not in agreement.
Time passed and my husband has gotten much weaker. His weakness is now in all four limbs. We finally saw the neuromuscular specialist this past Wednesday. After another EMG, he DX my husband with ALS, predominate lower motor damage. He indicated that my husband did not fit the "classical" picture of ALS but that his Weakness and rapid progression does. He still has no upper motor damage. My question is... If his progression is this rapid, wouldn't he have upper motor damage as well? The neuromuscular specialist said no neuropathy since no conduction block was found and his progression was too rapid for PMA. He welcomed us to go for another opinion, this time with an ALS Specialist. We are waiting for that referral..
My brain is in a fog. Just a week ago with the local neurologist, he still indicated to us that it could possibly be a neuropathy since there is no upper motor damage and this week, we have a DX of ALS. I have researched and researched that it is not necessarily true. I am looking for anything other than ALS. Can someone please tell me about fasciculation? Does it get worst? More? His is still pretty confined to his arms.
We are constricted to Kaiser Permanente DRs, due to our ins carrier. Come open enrollment, I am changing health plans and hoping to go to Mayo Clinic. I feel like they are missing something...
Thank you for reading. I look forward to any advice. I love my husband so much, I can't accept this DX because I don't feel right about it.
Also, does ALS cause soreness? My husband is so sore, sore to the touch. I asked the neuro about his symptoms like soreness, cramps, some numbness. He stated that muscles are dying, therefore soreness is apparent. These neurologist that we seen have no empathy....