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kelly81759

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My husband (John) is in the process of being diagnosed with ALS. He's been out of work for the last 7 months, at first for what we thought was an on-the-job injury. First the doctor thought it was tendinitis, then they said severe carpal tunnel, next was brachial neuritis. Some of this would explain the weakness in his arms, but nothing could explain his sudden problems walking and his overactive reflexes.

So far he's had an EMG, which is how they diagnosed the brachial neuritis in his arms, MRI of his complete back, and this morning he had an MRI of his brain. What are they trying to find with that?

Next week, we're going in for a muscle biopsy on his leg. What are they trying to find there?

Unfortunately, I was just in shock when the doctor ordered all these tests, so I didn't think to ask for an explanation, and I haven't found any answers yet.

Any advice anyone could give would be much appreciated!

Thanks,
Kelly
 

Jamiet

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Don't mean to sound concieted, but we know more than the neuros.....it's a fact.

MRI is looking for brain lesions, like MS.

Biopsy looks for everything and will tell the story.

It's going to be a long road, please feel free to vent here, ask waht you want we are here to help.

How old is your hubby, does he have any "atrophy" or dents / shrinking muscles? Any falls?

What was the neuro's full report.

Hyperactive reflexes can still be other things, but are a char. of ALS. You can read many post here and will learn alot.

Take care and hang in there

Rgds,

Jamie
 

brooksea

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Kelly,

they are just trying to rule everything out.

please let us know what is going on with your husband. did the doc say he thinks it ALS but lets look for other stuff? that seems really cruel to me. you said he was in the process of being diagnosed w/ALS, that's why I ask.
 

CindyM

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hi Kelley-welcome to the fourm. I hope they will come up with something treatable for your husband. We have lost too many good folks to this disease. :cry: If it comes to it and you need support and information, we are here for you. Cindy
 

kelly81759

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My husband is almost 43, and has always been very active. He has worked as a truck driver for the last 17 years or so.

We have 6 kids, and 2 new grandbabies that have just recently arrived.

The first neuro that he saw said that the symptoms sounded like ALS, but that the EMG was more consistent with the brachial neuritis that could have been caused by the on-the-job injury. He was trying to find an explanation that would encompass everything. He said brachial neuritis and ALS at the same time would be too much of a coincidence. When he couldn't find anything, he referred us to another neuro, one who seems to know a little more about ALS. She looked over his test results and says that she doesn't see anything else it could be, but of course has to run some more tests to finish ruling everything else out.

John has atrophy in some muscles, especially in his hands, where this all started. He has constant muscle twitching all up and down his arms. Nothing they have prescribed has stopped it, or even slowed it down. He has persistent pain in his lower back, we're waiting for the MRI results for that.

He has fallen several times now - just is not able to keep his balance. It is one of the scariest things I have seen. He has to walk with a cane now, and often stays home because it's too tiring to go out.

There has been no mention by anyone of doing a spinal tap. Is that a normal part of diagnosis, or up to the doctor's discretion?

We're off to the Social Security office this afternoon to file for benefits. I don't really know what to expect there either. I don't know anything about Medicare and what they cover. I also have to find new insurance for myself and the youngest 3 kids, because if this is what the doctor says, we'll lose the insurance we have through John's employer. So many things running through my mind, but nothing I can do yet!
 

CindyM

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Hi again Kelly. These are scary times, I'm sure. We can help by arming you with some information. For example, the issue of social security has been discussed on a couple of threads. If your hubby does not yet have a DX and the social security office is unsympathetic, do not despair. If it comes to it, the ALC clinic and local MD chapter will help with all sorts of red tape. If he gets to the point where a cane is not enough support, they will have loaner equipment as well.

I am anticiating that you might have run into resistance at Social Security. If you get the time, please search our threads to see how others made out. Don't panic - easier said than done, I'm sure! Cindy
 

kelly81759

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I've heard mention of ALS Clinics, and have found one close to my home. Question is, are they covered by insurance, do you have to pay to be seen, etc? And does your doctor have to refer you? John would like to get a second opinion if this is the diagnosis the doctor comes back with, and I was told that would be a good place to go.
 

liz

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I'm sure it depends on the details of your policy. My insurance covers the PT and pulmonary completely. I just have to pay the usual copay for seeing the doc.

Liz
 

CindyM

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You need a second opinion from the ALS clinic as sometimes the local docs do not have enough experience. ALS is too rare a disease. And if the ALS clinic gives a DX, they will put you in touch with the services you need. Most medical needs will be covered by Medicare and a lot of equipment can be loaned or otained through the local ALS chapter or MD society. But save now anyway. You may need to hire more help than will be provided, or you may have a hefty co-payment for some things, like wheelchairs.

It probably isn't time to think of these things, though. The docs could come up with something treatable, since many diseass mimic ALS. But my theory is it never hurts to be prepared. Cindy
 

brooksea

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Kelly,

If you go to the ALS Clinic, explain to them that you are without insurance until you can get medicare. The MDA should be able to fund your husband's exam. Maybe you should call them and speak with the social worker at the clinic and explain your situation.

We just went through the same thing. Husband's medicare doesn't start til September and he had appointment in July at the ALS clinic. They sent us a letter reminding us of the appointment with various information regarding legal services, durable medical equipment, MDA funding for those without insurance, etc...

As far as social security goes, a diagnosis of ALS will automatically qualify your husband for social security disability and medcare. But you will still have to wait5/6 months to start receiving any money. But----you can file for SSI if you have very low assets and very little or no income, which will help you right away.

Also look into MediCal since you live in California (I believe that's where you live?). And look into your state's childrens insurance program that is funded jointly by the state and the federal government.

It is sad that PALS and their families have to jump through so many hoops just to maintain a decent quality of life.
 
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