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mercyriver

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I have been lurking around this site for a while now, hesitant to post anything. I thought I would share about my husband and see what kind of feedback I can get.


My husband is 33 and was diagnosed with cancer in 2006. After surgery, chemo and then more surgery we thought we were free and clear and ready to steam full speed into life again.

In early 2008 my husband started having trouble while driving, he would get seemingly distracted and drift out of his lane or try to move over and not see the car next to him. Shortly after that started he started having trouble walking, he was tripping over his own feet and over tiny cracks in the sidewalk. He also complained that he was having a hard time typing. His typing had become slow and methodical and riddled with mistakes. He pretty much "types" for a living, so it was a great concern.

To add insult to injury he also started having trouble with his short term memory and finding the right word for things. And on top of all of that his personality did a 180.

I finally convinced him to call his doctor who sent him in for an emergency MRI, fearing a reoccurrence of his cancer to his brain. They found nothing.

He saw a neurologist who said it was stress and sent us home.

After pushing and insisting for several weeks, I convince him to see another neurologist. He tested for almost everything under the sun and came back with really nothing. In the end he insisted it was really marital problems and nothing more.

All the while the problems continued. My husband was also having sleeping problems, which continue to this day. As he is falling asleep (every single night) he twitches fairly violently and then falls off to sleep in a matter of minutes. He has gone through episodes of major insomnia and episodes of gasping and making odd noises in his sleep. Two sleep studies later he was told he has central sleep apnea. The doctor who did the sleep study insisted that he be monitored at home, the sleep neurologist he saw said he was fine and sent us on our way.

In the midst of all the sleep issues I finally convinced my husband to get some neuropsychological testing done. The test found he had a couple mild spots of trouble with some memory things and language things, nothing of concern accordingto the neuropsych. They also found that his left hand fine motor coordination was mildly impaired. At the time I wasn't sure what to make of it, but 18 months later I kick myself for not getting more answers on that one. They sent us away saying it was anxiety and depression and he should see someone. He refused.

So that is his history to 18 months ago. At that point I stopped looking for answers, it was frustrating him that I insisted something was wrong with him and it was damaging our relationship.

Over the past 18 months the memory and language trouble have stayed about the same, they are still there, but they are no worse. He has learned to concentrate more while driving, so his driving has improved.

His psychical body however has continued to change. He suffers from on and off muscle spasms and cramps. They occur mostly in his feet, calves and lower back, but this past week he had trouble with his neck and left shoulder cramping up.

He has lost muscle mass on the top and side of both shoulders over the past 18 months. So much so that you can see the top of his clavicle bones. My husband insists his shoulders have always been this thin, but I've been married to him 10 years, I know for a fact they haven't always been that thin. In addition he has lost muscle mass on both legs just above his knees. His calves are now significantly larger than his lower thighs.

In addition to this, his left shoulder sits much lower than right shoulder.

He tires very easily after doing any sort of physical activity, in fact, one of his most common phrases is "why am I so tiered?". The man who used to give me 30 minute back rubs now has to stop after 5 minutes because his arm muscles "cramp up".

He still trips often, mostly when walking up the stairs, but occasionally when just walking. Last night he fell down a short set of stairs carrying a vacuum, he wouldn't say anything about it other than that he was fine.

Over the past year he has started having excess saliva in his mouth, which makes it awkward to kiss him most of the time. As far as I know, he isn't aware of it.

He chokes often while drinking liquids, but thankfully not while eating food.

I know many of these things do sound like motor neuron disease, while I am sure many of them do not.

I wish it had occurred to me when they were doing all the neurological testing to insist on doing an EMG, but it did not and they never thought to do it either. My husband despises going to the doctor and I am not sure I will ever get him to go in again, unless something major happens.

So, I have gotten it all down in writing now, I know I left some things out and gave to much information about other things, but I am still hoping to get a little feedback. At the very least, I have most of the information down in one place now. Some day if I need to print it out to tell his story I can!

~Mercy River~
 
You mentioned about his muscles getting larger? That would be a good thing and would point away from als? Also you said he still trips over things, so he hasn't changed much in terms of weakness over the 18 months? This is a good thing, as he would of got alot worse. You should definatley speak to a doctor, can you contact one of them if he won't? Did your doctor speak to you about having any side effects from his brain cancer?
 
I hope all is well and i feel for you, but you really do need to get him do a proper doctor, i don't live in the same country as you but many people here live in USA and can refer you to really good als specalists i would ring someone up and have an emg done. It may not even be als as he hasnt got weaker over 18months he may have something else but it's better getting help and sorted out!
 
Hello

There are several potential issues going on. First, though, if the sleep study showed central apnea--that can be the source of perhaps the majority of his problems. His brain is being starved. Is he using a c-pap at night?

you don't say where the cancer was--is paraneoplastic syndrome a possibility?

I gather you don't mean that his thighs have gotten smaller--just that they have shrunk to the point that his calves are now larger?

Were it me, my first stop would be to the oncologist that treated the cancer. They would be able to check for paraneoplastic syndromes.

Next-go back to the one that did the sleep study that showed the apnea--and get it treated.

You said he had a bunch of tests....what tests?

EMG/NCV are vital -- they can rule in or out many issues! Since you are suspicious of ALS--I'd recommend going through the ALSA and find a neuro who specializes in motor neuron and neuromuscular issues.

There are many, many possibilities--ALS is only one of them--and probably the least likely.

Can you tell us exactly what tests have been done? Was he seen by an ALS specialist or a general neuro? Who decided the cancer didn't come back?

Of course none of us can diagnose him...but certain things must be done. First and foremost, get his apnea treated, as it could be causing the rest of the issues!

Do his physical exams show any hyper reflexes? Clonus? Babinski positive?

Have they considered a spinal tap? Have they ruled OUT MS?

I agree that you need answers. People don't trip and fall for no reason--not often at any rate. Especially someone young.

The hardest part for you at this point is likely going to be getting him to even agree to see a specialist--but I'd certainly call the ALSA and find one!
 
Sorry for any confusion, my first post was kind of all over the place.

speccy277- I didn't mean to say his muscle is larger, his calf muscles are larger than his thigh muscles because his thigh muscles have shrank so much in the past year. He didn't have brain cancer, they were worried his cancer may have spread to his brain. He sees his oncologist at least twice a year and they test every time to confirm his cancer has not returned. And according to his oncologist, it is not the cancer treatments that have caused these problems



Patty- So to answer one of your questions, they have ruled out paraneoplastic disorders. I was certain that was what it was going to be after the neurologist talked about what the test checked and I did research on it. It fit my husband's symptoms perfectly. But they all came back negative.

As for the types of tests, it was a general neurologist and I never was able to get a copy of his file of what they tested for. I know they a lot of blood work to rule out anything like B12 deficiency, but without any paperwork, I don't know what else they tested. They did a complete neurological exam, checking his reflexes and such, once again, I was never able to get his records, maybe that is something I need to work on.

They did perform two different MRI's, they weren't specifically looking for MS alone, but they did say both his MRI's were normal. One of his MRI's said they were checking because he had Mild Cognitive Impairment, but the neurologist never said that to us.


As for the sleep apnea, my husband is 75% of the problem in getting any answers. He is against seeking any further treatment. He likes as little treatment as possible when it comes to ANY medical issue. So if he can find a doctor that says he is fine and doesn't need any more treatment, he happily takes that and leaves. His resting respiratory rate (they check his vitals at the Dr's office) has also decreased in the past few years, not sure how significant it is, as it hasn't bothered anyone.

And as for weakness, to me it has continued to get worse over the past year, but I am not him and I can't say for sure. I can only observe what he can and cannot do. It hasn't gotten to the point where it is severe though.

Thanks for all your feedback and suggestions. I think I will start by trying to get copies of his medical records from the neurologist and then see where I can go from there.

~Mercy River~
 
I'd suggest going to an ALS clinic, then. Also, get copies of ALL records---they can not refuse to give him the copies; it's illegal to refuse.
 
If your husband's problems had been caused by ALS, beginning three years ago, he would be substantially crippled -- not mildly weak -- in one or more limbs by now. Muscles would not just be "shrinking" in his body, they would be permanently paralyzed and unusable.

So, while you may think that your husband's symptoms point to MND, his conspicuous lack of progression in lower motor neuron symptoms points away from any lower motor neuron disorder, such as ALS. There is a very remote possibility that your husband could have a disorder involving only the upper motor neurons, but, once again, the lack of progression points away from that.

This is not to say that your husband doesn't have something wrong with him. It sounds like he might have some problems, with the untreated sleep apnea being at the top of that list. How serious they are is anyone's guess, but, from the story you've told here, they bother you more than they do him. Frankly, it appears to me that you are wasting time and energy trying to convince yourself that some very mild symptoms are being caused by a fearsome disease, rather than evaluating the conditions as they are and dealing with them appropriately. Why you want to believe that, I have no idea.
 
Patty- I requested the record this afternoon. As for getting him to an ALS clinic, that would take one of his doctors suggesting it to get him to go. But it is something I will look into if the time ever arises.

trfogey - I have no idea what is causing any of my husband symptoms. It may or may not be MND. You say that it seems to bother me more than him, it may be true, but that in itself can be a problem. If it were just me along for the ride in his life, that would be fine, but he has 3 children. I have spent the past three years watching him deteriorate, maybe not as fast as the typical ALS patient, but his body and his mind have both changed substantially over the past 36 months. He can deny it all he wants, but it still exists. His family and mine have both expressed concern over things, but he tells them the same, it is no big deal. There is nothing I can do but hope to find some direction. As you are not here seeing what I see and know exactly everything that has changed with him, I know you can't understand 100%. The internet makes that impossible.

I came to the ALS forum hoping to bounce my story off of the people here to see if MND is the direction I should bother heading. If it isn't, that is find. I just want some feed back and I have gotten some of that today.

I see my job as his wife and as a mother to make sure that our children are well taken care of. If that is going to change in the near future because he is going to continue to deteriorate to a point of not being able to work, I need to know that now and start preparing.

I know no one on this forum can give me an answer, but again, like I said, I really am here to bounce my story off of some knowledgeable people.
 
Hello mercyriver

His story does not really point in the direction of ALS for a few reasons:

One, is the weakness in both of his legs simultaneously. That is simply not how ALS typically presents; ALS typically starts in a single region and marches methodically to adjacent regions.

Two, is where the weakness is in his legs; you said it was his thighs. ALS typically, initially affects muscles that are more distal (i.e. further away from the trunk, such as hand muscles and foot muslces) and then marches methodically up the limbs towards the trunk.

Third, if he has as much muscle atrophy as you say he does, he would more than likely be profoundly weak if he had ALS.

Fourth, is that you indicate that he also has bulbar symptoms (i.e. choking on liquids). It would be incredibly rare (and I mean incredibly rare, almost unheard of) for ALS to start in the limbs and the bulbar region simultaneously.

Fifth (as trfogey states), his relative lack of progression in such a long period of time.

Sixth, is his age. ALS is rare in people younger than 40 and the younger you are than 40, the more rare it is.

Bottom line: many things point away from ALS and given your husband's central sleep apnea diagnosis, that is where things should start. An EMG would be helpful as well to see if there is any type of nerve or muslce damage (not necessarily from ALS but from a multitude of other things). I certainly cannot sit here and tell you definitively that he doesn't have ALS but odds are in his favor that he doesn't

I wish you and your husband luck in finding what is ailing him.
 
Thanks Wright. That helps immensely!

~MercyRiver~
 
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