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For the last few weeks I have been stalking the forums here and I am a bit nervous to be posting at all. First I am the nervous nelly wife - don't be too hard on me. ;)

Around Thanksgiving my husband J came to me about having pain, numbness, and tingling in his left arm. I figured he had done too much in the gym and had injured himself. He had recently turned 40 and was out doing himself. I told him to give it awhile, to stay out of the gym and see of his arm cleared up. It didn't. After talking with our neighbor who is a physical therapist a month later he recommended that J go see a neurosurgeon bc it felt like C6 was herniated and could be pinching off the nerve in his arm. We had to see our GP to get the referral and he agreed after viewing Xrays of the neck and doing an examination. Onward we went. MRI was done first week of January where we were told that yes, even though there was a herniation at C6 the MRI was "clean" meaning there was nothing pinching/compressing the nerves at all in the left arm and that he was not a candidate for surgery. He was given steroids and an anti-inflammatory and told to return in a month.

Over the next five weeks, the numbness and pain disappeared. However, his arm was still weak and had begun to atrophy. J was also having trouble lifting things (like holding our children, groceries, laundry) that he never had before. I also noticed that his chest muscle and shoulder muscle were also smaller and that they twitched. He was noticeably lopsided. We passed it off as him not using it as much and waited for the next appointment.

Second week of Feb. come and the neurosurgeon says that obviously with the condition of his arm, there is something pinched and he needed surgery, showed a video about it and told J to call back when he was ready. Something didn't seem right and after discussing it with our PT friend and another friend that is a dr we opted to go for a second opinion.

End of Feb we have second neurosurgeon appt and the left arm is worse. It is smaller, weaker, and twitching - even when not under strain. So the second guy goes over everything with us and says he doesn't believe J is a candidate for surgery because his MRI is not showing any problems and then goes on to do more of an exam. At first I was a little amused, especially when he was asking J to stick out his tongue and said "That looks good" and then he want on to note the twitching in his arm and could J feel it. He then brought up have a neuromuscular disorder and had we ever heard of ALS. This was not something we even had thought could be wrong (like who would?) That day an EMG and NCT were scheduled.

I've always said that if the doctor puts you in the nice exam room with the cushy chairs that you are not going to get good news, and if they tell you they are not going to charge you for your appt you better just hold on for the ride. EMG showed abnormality through out the left arm, and he had no signs that the problems he is having are coming from brachial plexitis or from his neck or spine. Not the news we were expecting or hoping for. Again neuromuscular disorders were brought up again and ALS specifically.

We have an appt. with a neurologist the first week of April and we really do not know what to expect next. (brain mri, blood tests I am sure) So far nothing else appears to be wrong (he has had some vertigo) but the left arm has not improved at all and the twitching seems to be worse in the shoulder and chest. We did speak to our GP about the results and he thinks if it was ALS that J's speech and swallowing would be affected first (not sure why, this is what he told us)

So this is where we are at. Any words of wisdom or advice is welcomed.

Kim
 
Kim i sure hope you get different news...anything!I will certainly be thinking of you and your husband. Please let us know what you find out, and try to have a positive attitude until you have a reason not too:)
 
I am sorry that you are in this situation. I know first hand it is not easy. Just remember that regardless of the outcome of your final diagnosis the sun will rise the next day and so will you. There is no right or wrong way to deal with a diagnosis of ALS certainly a good cry is healthy but just remember you are the same person and need to go on living your life. I pray that you end up with a different diagnosis. Stay strong and keep the faith!
 
We have an appt. with a neurologist the first week of April and we really do not know what to expect next. (brain mri, blood tests I am sure) So far nothing else appears to be wrong (he has had some vertigo) but the left arm has not improved at all and the twitching seems to be worse in the shoulder and chest. We did speak to our GP about the results and he thinks if it was ALS that J's speech and swallowing would be affected first (not sure why, this is what he told us)

So this is where we are at. Any words of wisdom or advice is welcomed.

Kim

Hate to say this, but your GP is way off here. Only about a quarter of ALS patients have speech and or swallowing difficulty as their initial symptoms. Fully 70 percent of ALS patients start in a limb, either an arm or a leg.

That having been said, don't give up hope. There are some other conditions that can present similarly to ALS, so your husband will need to be tested for those. Expect more blood tests, more MRI's, and a much more thorough evaluation of your husband's strength and muscle function through out his entire body.

It's going to take a while to get the answers, so hang in there, and feel free to ask any questions you have here. Good luck to both of you.
 
I hope you get better results than ALS. I had a brief hope it was my cervical spine, but my herniated disc in almost the same place turned out to be asyptomatic also. It was a big disappointment, I feel for you both.

While you are working through diagnosis, you might want to browse around for some advice of how to live with the weakness he's experiencing - we made a few threads with low hand function life aids and the like. Stuff like this can make something as simple as wiping your butt complicated, but there are things to help.
 
Beautifulwreck, sorry that you are both going through all this trauma. I hope all goes well for your neuro appt.

Aly
 
Hate to say this, but your GP is way off here. Only about a quarter of ALS patients have speech and or swallowing difficulty as their initial symptoms. Fully 70 percent of ALS patients start in a limb, either an arm or a leg.

That having been said, don't give up hope. There are some other conditions that can present similarly to ALS, so your husband will need to be tested for those. Expect more blood tests, more MRI's, and a much more thorough evaluation of your husband's strength and muscle function through out his entire body.

It's going to take a while to get the answers, so hang in there, and feel free to ask any questions you have here. Good luck to both of you.

That is what I had read but I just shut up and listened to our GP talk. It was obvious when he was looking at the EMG results that he didn't know what he was looking at and since he is a friend of our family I think he wanted to reassure us in some way.

The thing that is hardest is the way it all kinds of drags out. I am not a patient person, might be a bit of a control freak, but who can blame me I have five kids!
 
I hope you get better results than ALS. I had a brief hope it was my cervical spine, but my herniated disc in almost the same place turned out to be asyptomatic also. It was a big disappointment, I feel for you both.

While you are working through diagnosis, you might want to browse around for some advice of how to live with the weakness he's experiencing - we made a few threads with low hand function life aids and the like. Stuff like this can make something as simple as wiping your butt complicated, but there are things to help.

Thanks for the info, I will definitely check that out.

So far his hand works fine, the weakness seems to come more from the upper part of the arm, the shoulder and through the chest. However has had some cramping throughout the arm. :sad: Both hands showed he had Carpal Tunnel, but the left was worse which they found interesting since he is right handed, but so far so good. His grip seems to be fine in the left, but not as well as the right. Sometimes he drops things, sometimes he doesn't. It is weird how it seems to work better some days than others. Not sure if that is even significant.

He is back in the gym and he has exercises that he does do with the left arm though he says it is really not changing any.
 
Don't be nervous about posting here. You have been given some great advice, and if it has been said already I apologize....

Sensory issues are not usually an ALS indication. I think you mentioned pain, numbness, and tingling. That would point to something more benign - hope that helps you get through this. Like trfogey said, many things, even conditions not nerve/muscle-related, can mimic ALS. But a good neuromuscular doc is a great place to start.

Hope that gives you some peace during the diagnostic process, because those 5 kids won't:smile:

From one control freak to (possibly) another.:smile:
 
Don't be nervous about posting here. You have been given some great advice, and if it has been said already I apologize....

Sensory issues are not usually an ALS indication. I think you mentioned pain, numbness, and tingling. That would point to something more benign - hope that helps you get through this. Like trfogey said, many things, even conditions not nerve/muscle-related, can mimic ALS. But a good neuromuscular doc is a great place to start.

Hope that gives you some peace during the diagnostic process, because those 5 kids won't:smile:

From one control freak to (possibly) another.:smile:

The pain, numbness, and tingling went away after the steroids. Sorry if I was not clear on that. They believe those issues are totally unrelated to the weakness, atrophy, twitching and cramping in the left arm, shoulder, and chest.

We are keeping are fingers crossed that it is something else. I know for one thing, no matter what this whole experience has changed our lives and what we want from it.
 
Hmmm, steroids are sometimes used to treat neuropathies so might have had an initial impact on what is happening just by coincidence.

Again, no doctor here and take that with a large grain of salt. I know you guys are anxious, but a good NM specialist will figure it out. Try to stay at peace as much as possible - I know it's hard.
 
Hi Kim, another Kim here, I am so upset for your issue as like me you want answers fast, I am the exactly same way ( perhaps this also comes from having a large family I had 4 children and you need stability at all times), I can tell you that it is very important that you try to get as many tests done to rule out MANY things that could be doing this to your husband, this will require patients that I know will be very hard for you, hang in there Kim and NEVER FEEL like you cannot post here as there are many people who will help you through your issues until you get resolve to them. I pray the outcome is not ALS however if for some reason it is there will be MANY people to help you through the hurricane (((((((((((((((((((hugs)))))))))))))))))) praying for you and your family.
 
As with the others, sorry that you are going through this. I agree that although the road to diagnosis can be long, the right tests and specialist are important to have. We have been fortunate that my husband's GP knew right away something wasn't right. He was referred to a neurologist the next day.

I wish you all the best. I lurked about the boards for quite awhile before posting. I don't post often, but feel blessed that these folks are here.
Love and light
Meg
 
Hello Beautiful Wreck

Has anyone mentioned the condition, Parsonage-Turner Syndrome (it is a type of peripheral neuropathy)? His story fits that much better, because of the speed of his progression.

If I understand you correctly, he showed absolutely no signs of weakness or atrophy prior to Thanksgiving . . . and now just a few months later . . . his entire arm, deltoid and chest are atrophying and becoming weaker. That is not at all typical of ALS (at least nothing I have ever heard). You also indicate that he doesn't seem to be progressing any further. That is another good sign and one that points in the direction of Parsonage-Turner.

Please tell him to get out of the gym, though. If he has not fully recovered from his neuropathy (or god forbid, if it's something else), being in the gym is only going to make things worse or at very least, hasten his recovery.

Please hang in there and try not to worry until you have the full story. Keep us posted and ask us as many questions as you would like in the meantime.
 
Hmmm, steroids are sometimes used to treat neuropathies so might have had an initial impact on what is happening just by coincidence.

Again, no doctor here and take that with a large grain of salt. I know you guys are anxious, but a good NM specialist will figure it out. Try to stay at peace as much as possible - I know it's hard.

I live on the Gulf Coast. Many of the neurologist down here, I hate to be ugly treat mostly add/adhd and give people pills for the crazy (not that I am opposed to that...LOL) The guy we are seeing is GREEN. His specialty is brain cancer but during his residency he did research on neuromuscular disorders. He was chief resident and has had some things published, so he is not a dummy and he never gets a cancellation (per his staff). But when I saw his picture I kept thinking Doogie Howser! But the referral we got from the neurosurgeon assures us this guy is a good person to start with here before going elsewhere (like Atlanta).

It is good to have a place to chat and share what is going on instead of being a stalker, I mean lurker!

K
 
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