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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....
 
Hope, I am so sorry about your husband's diagnosis. I understand that feeling of it must be something else and looking for a different answer.

I don't know all the answers, but in order for a diagnosis of ALS, there must be Upper and Lower motor neurons involved. other diseases have just Lower and just Upper. are you sure the doc said no upper or did he say lower dominant with little upper involvement? In classical ALS, a person experiences both UMN and LMN signs in the same region, for example in an arm. However, there is a spectrum of involvement within a region. Sometimes people who have symptoms predominantly associated with UMN disease, so the picture is one of tremendous spasticity and slow movement. However an EMG test will give evidence of the LMN component of ALS. A rare person may only have UMN involvement without any LMN dysfunction. In the US, we would label this condition as “Primary Lateral Sclerosis” (PLS). On the other side of the MND spectrum, another person may only have LMN signs with minimal UMN findings.

You definitely should go for a second opinion with an ALS expert, preferably a clinic. (look on the ALSA website for a list of those). If your husband has a diagnosis, he will be able to get on medicare and disability right away (with in 6 months) and you can take him to Mayo if you like.

It is a hard and bitter pill to swallow, but you must hope for the best and plan for the worst in ALS. do not hesitate if he is progressing. You will grieve and it will be hard, but YOU WILL BE ABLE TO BE STRONG ENOUGH TO FACE THIS. It breaks my heart to read of your young children...I hope you have family and friends that can help you with this. don't hesitate to involve them.

wishing you all the best.
 
First off - I'm terribly sorry about the hurricane devastating your young family. That's the crappiest of crappiest - when ALS hits young people. The shock fog will lift, this I promise. You need to find a way to get some sleep though. See your own GP for assistance if you need to. Enlist your friends and family to help you through the initial mine field, that is ALS. The babies are no doubt feeling the tension in the house.

That being said, if I were you, I would seek a second opinion from an ALS specialist. Sooner rather than later.

To answer your question - I do have pain and sometimes it is sore to the touch, but I've never experienced numbness.

Take a few days to just be with each other. Stop researching and give your head a rest.

Come what may, we are here for you.
 
Tim has seen 5 neurologist, 3 American & 2 Canadian, and all insist that he has ALS in spite of the fact that he does not show UMN deficit. The one ALS specialist in Dallas said that he had found some, but was not able to reproduce them when I was there for a check up. We did a trial of IVIG and did have some positive results, and 3 neurologist agreed to continue, although they all said that his progression was too fast for MMN, and he did not get enough of an improvement from the IVIG. We did stop the IVIG in June as he stopped having any improvement. So I know where you are at, because I was sure it was MMN although his weakness started in his leg rather than an arm. He has been told by all of them that he has an atypical ALS, so we just carry on. We have been blessed that he has not lost his ability to talk, chew or swallow, and we will take that. I'm sorry that this had to happen at this stage of his life. Remember God IS with you, and read the story of Job again. Tim says that he is being watched, and not necessary by people, and how he reacts to this trial is very important. You will be in our prayers.

Paulette
 
Thank you for all your replies.

Barbie, no upper... Just lower. DX is ALS, of predominately lower motor neurons. This is why I question the DX. I understand that with ALS, both upper and lower hand to be involved to some degree. They say he doesn't fit perfectly into any disease category do it is ALS... Well, to me.. He doesn't fit perfectly into ALS either.

I'm just very emotional right now. I can't think straight. For the last two nights, I've watched my husband and children sleep while I cry myself to sleep and cling on to any kind of Hope. I think I will be content if they allowed him to try IVIG and if he didn't respond than, I'd accept it but I feel cheated.

Diagnosis is an art, not a science and there is no one definitive test for ALS and when there is 1% of the disease being something else, why not try treatment?

His DR emailed me today asking if we wanted to try Ritulek (I think that's how you spell it) and that my husband may be eligible to take part in an ALS study. What does that mean anyway?

My eyes hurt, my head is pounding and my heart is bleeding but I won't give up. I'll never give up on my family. I am so sad, I can't even put in words.
 
oh hope I am so sincerely sorry for this devastating situation you are in.

we will give you all the support we can, we all know the anger, despair, fear and frustration of going through the process to diagnosis and then finding our way out of that and into a different way of living.

I do hope you have help you can draw on, especially with those babies?
do use this place to express yourself as you will find that we have all gone through and are going through the same.

hugs
 
taking part in a drug trial can help you both to get your arms wrapped around this. google NEALS Consortium.com click on drug trials, this provides who, what, where, when and how many. Ritulek, some say yes, some say no. I never have. Keep the faith. There is slow progression, at 77 I still walk, talk, eat, breath on my own.
 
I can't imagine if it were my husband; I have a hard enough time it's my dad. Like you, I could not accept ALS because my dad progressed rapidly but up until the last month he only had UM symptoms, his only LM symptom is he is a little slower but doesnt have the classic foot drop.

The fog lifts, in my case I'm still not 100% there. We, too, had first symptoms in February and ALS was first mentioned at the end of April. It's okay to cry, scream and be mad at the world. I still get upset when I see people who are older than my dad that are healthy but live horrible lives.

Personally, I listen to lots of Praise and Worship music and even though I do get angry at God at times it helps calm me. I also read a daily devotional given to me by a friend. Casting Crowns "Praise you in this storm" is a great song, feel free to message me for my playlist.
 
Hope, I am so sorry for the diagnosis your husband has received. I admit I too have been angry with God since my diagnosis, but I know that it's not God's fault.
I will keep your precious family in my thoughts and prayers.
 
Hope, I would recommend calling Forbes Norris in San Fran. It is one of the top 2 centers in the US. They also go to Sacramento and hold clinics there every couple months.

http://www.cpmc.org/services/als/about/
 
Thank you for all your replies.

...

Diagnosis is an art, not a science and there is no one definitive test for ALS and when there is 1% of the disease being something else, why not try treatment?
...

I was diagnosed last August, but like you say 'diagnosis is an art' so there is always that hope. There seems to be no norm -- everyone is different. I can still walk, although it is a bit rocky. Swallowing is a problem, eating is a problem, typing is a problem which is why I don't contribute here very often.

We play the hand we are dealt and cheat if we can :).

Max
 
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