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goodgreif

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The doctor says he cannot rule out ALS at this time but he also cannot explain my husband's symptoms. So we have been in limbo for quite some time. The conclusion of the EMG report says:

This study was abnormal. NCS was normal except for mildly small superficial peroneal SNAP amplitude. EMG showed active denervation in the right arm muscles and one thoracic paraspinal muscle. Fasciculation was seen in the right arm and leg muscles. Chronic neurogenic changes were seen the right arm muscles. These results are insufficient to diagnose motor neuron disease though being in its early phase can not be ruled out. The study showed no findings to suggest peripheral neuropathy to explain his condition. Clinical correlation is recommended.
 

Barbie

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this says that it can't be ruled out and they suggest clinical observation --kind of a wait and see.

Sorry. try to stay positive and enjoy your time now. hard to do, but if it is als things will only get worse. so think about the trips you want to take the things you want to do and say and go for it now.
 

goodgreif

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That is what I was thinking it meant and is so hard not knowing. I want to hear the doctor say the words no your husband does not have ALS and you can get that off of your mind now. I have tried to get my husband to do some traveling but he does not seem to want to do that. I have kind of given up on that right now.
 

Lilacs53

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I would get a 2nd opinion from a Neurologist that specializes in ALS. It will mean another EMG and other tests should be done to rule out anything else. Like blood tests, MRI of the back and head, xray of the chest, and a spinal tap, although he may have already had these. Hope it turns out that he doesn't have it.
 

maryhahnward

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Goodgrief - it took years before my husband was given a diagnosis. He went to a few neurologists, not just one, and not just to one medical center. In the world of ALS when it takes years to be given this diagnosis you are in as good a place as anyone could hope for. His is in a small category of slowly progressive.

If it were me I'd love to travel but that's because I love to travel. My husband is not crazy about travel so we don't do too much. We do some, and he agrees because I want to travel with him, I love his company.

Keep plugging away at a diagnosis, if his ALS is really a faster moving one you, and he, will know it soon enough and so will the neuros. If it remains slow it will take a while before a diagnosis is made. Slow progressives are more challenging to diagnosis, it would make sense to go to a neuro who has seen many cases of ALS.

I wish you and your husband all the best.
 

affected

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It is very hard, but we've all been there waiting for a diagnosis.

I am glad we never got it any sooner, life changed forever once we did. Ignorance was definitely bliss, even if at the time it seemed so hard to be waiting!

All the best learning to just go make the most of every day. If he doesn't want to travel, make the most in little ways together!
 

goodgreif

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CALS
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Thank all of you for your advice. I appreciate it very much. It helps to talk to people going through the same thing because no one seems to understand.
 

goodgreif

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Family members are questioning whether ALS is even a possibility because my husband shows no outward signs and everyone keeps saying how good he looks. Any symptoms he brings up they say I have that too, you have always been like that or I don't notice that.
 

MaxEidswick

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>I would get a 2nd opinion from a Neurologist that specializes in ALS.

Ditto that!
 

goodgreif

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We have been to a family practice doctor who referred us to a local neurologist. Then we went to an ALS specialist and after that we are now on the 3rd opinion I guess and none have been able to rule it out yet but say it could be in the early stages. All of the Neurologist pretty much said the same thing.
 

MaxEidswick

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checkk w/ mda and/or alsa for referrals. what state?
 

Dusty7

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ALS is a disease of widespread acute and chronic denervation. In its early stages ALS generally starts in one limb. Therefore, your husband's EMG could well be showing ALS in its early stages, but at this point it is not widespread, so it would be a leap for any neuro to call it ALS.

The call I would expect from most neuros would be to wait and look again in 3 or 6 months. This is frustrating to those of us who want an answer NOW, but you have to understand that if it is ALS, there is nothing that your neuro can do. And if it is not ALS, waiting to see what other symptoms develop is the best course of action.

The longer it takes for more symptoms to develop, the more frustration for you... but the longer it takes for the denervation to become widespread, the better chance your husband fits in the "slow progression" group of PALS, and if you're going to have ALS, "slow progression" is best way to go.
 

ECpara

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Waiting is so tough! I'm with Max and Lilacs, I'd continue looking for another ALS specialist. In the meantime I wish you and your husband the best. I hope this long journey ends with good news.
 
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