Worried

[michelleann80]

Good Evening,

I have been reading many posts on these forums, and I guess I was looking for information, that would make me think there was no way my husband could have ALS, but sadly, it is the opposite. A little background- In August of 2014 my husband broke his ankle on a rocky beach. It was a clean break, and should have been healed in a couple months. But, his limp on his right side, was not getting better, but much worse. He would stomp around the house, and I would be like why are you stomping your feet like that?!
A few months ago, he fell in the kitchen, hard, on his face. I came to find out this wasn't the first time this had happened. I completely freaked out and we went to CVS to buy him a cane. And called the orthopedic doctor, he had seen for his ankle, to see what was going on. The orthopedic doctor said his symptoms, had nothing to do with his previously broken ankle. He then referred us to a neurologist. We went to see the neurologist, he recommended a MR Lumbar Spine MRI, was thinking maybe a pinched nerve in his back? Got the results the same day, no nothing troubling with that MRI. Had an appt. the next day for a MR Brain without contrast. Again, nothing to explain his symptoms. He got a RX for an AFO and we were able to get that custom fitted and had it the very next day. He then had him go through nerve testing. His right calf has considerable muscle loss, it is I would say less than half a size smaller than his other calf. Anyways, his nerves are so bad, there was no response in his right leg, and a little response from his left leg. We go see the neurologist after this test, and tells us we will need to go to the ALS center so he can be tested for ALS. He is 39 years old, to young for this, isn't he? He can barely walk with the cane. His limp is so severe. He has such difficult time walking. Even with a cane, he has fallen. He has many charley horse cramps as well. He has an appt. on Monday 9/14 for ALS testing. Can anyone tell me what kind of tests he should expect, and when we may receive the results from those tests? Thank you so much for reading, and any comments are welcome! Thanks again!

 

[Atsugi]

Hi Michelle Ann. Sorry to hear you're so worried. Thanks for including so much detail.

First, let's not jump to ALS quite so fast. There are certainly problems, but I can't go from your description to ALS quite yet.

Tell us what this means:
"He then had him go through nerve testing...his nerves are so bad, there was no response in his right leg, and a little response from his left leg."

Was that from an EMG test? He would remember being stuck with needles and being shocked with electricity in various places.

There can be other problems besides ALS. Did he have an EMG? What exactly did the results say?

--Mike

 

[GregK]

ALS is a diagnosis of exclusion. They test for everything it could be and call it ALS when everything else has been excluded.

He's had many of the tests but there are still more. There are blood tests and probably a spinal tap.
There is a test call EMG that is very useful. It's a,so very uncomfortable as they stick electrodes in your limbs and watch the nerve impulses.

Finally, you should have posted this question in the Do I have ALS forum. Go there and read the Sticky titled PLEASE READ BEFORE POSTING.

Good luck

 

[michelleann80]

Hello, thanks for replying. He was stuck with needles and shocked with the electricity (the bill calls it a nerve conduction study). The doctor did both of his legs (top and bottom), his wrists and his lower back. I do apologize, I do not recall exactly what the results said. Just that his right leg did not respond at all to the testing, his left leg a little. His back and wrists all reacted as normal during the testing. I will see if I can get some info on that. I did read the sticky about what other things it could be (sorry I did not read that sticky before I posted). His neurologist did say, he was not saying he had ALS, but wanted to rule it out. The foot drop and atrophy is just seems to be getting worse, which worries me. I read that there is no actual test for ALS, it really is just ruling out other things that it could be. I suppose the ALS center will conduct any other tests the neurologist did not? Thanks again for the reply!

 

[michelleann80]

Sorry! I posted a reply to the first comment, and then saw yours. I do apologize I posted in the wrong area.

 

[Atsugi]

nerve conduction study. I suppose the ALS center will conduct any other tests the neurologist did not?

Sounds like he had both an NCS and a needle EMG. That's how it's commonly done.

There's no definitive test that says ALS (yes/no). They have to consider the physical symptoms and the test results and come to a decision. Sometimes they can't be definite. If it is, indeed, ALS, it might be "probable ALS" or "possible ALS" or something else.

Be sure to bring a notebook and pen and take notes. Ask lots of questions and write the answers.

If the neurologist gives you a diagnosis, ask for a letter stating the diagnosis. I found that letter useful with getting Social Security and Medicare benefits.

His he a veteran with at least 90 days of active duty?

 

[lgelb]

Michelle,
Whether he had a NCS and/or EMG already (it sounds like he at least had nerve conduction testing), they will probably repeat both at the ALS center. The NCS tests the nerves' ability to send electrical signals and how fast they send them, while the EMG tests the electrical activity of muscles while at rest and while they are contracting.

The EMG is always abnormal in ALS. Usually the NCS is normal in ALS but can be abnormal due to other conditions that are also present, like carpal tunnel or diabetic neuropathy. Those are the major tests that are often done before your husband would see the neuro at the center, but they may also draw blood, depending on what tests he's already had. The neuro will also examine him, of course, and ask about symptoms, timing, duration and so on. I can't tell from your description if that will be at the same or a separate visit. Or s/he may see him first, on the 14th, and then order testing for a second visit. Centers vary in how that works. Generally the diagnostic process is as fast as possible. You have the right to ask for results to date at any time.

So, you will probably know more on Monday. If he is only tested and not examined, you can ask the clinician who performs the tests (who may or may not be the neuro that does other testing/treatment) and will not be prepared to hand you a full report, at least for directional information, as in "Have you seen anything today that suggests a differential other than motor neuron disease?" and/or "At this point, is ALS the highest-probability differential?" And some clinicians will just say it out anyway.

What center are you going to? We have some other NC members who may go there also.

While you are going through the diagnostic process, I would get him a rollator (not a "regular" walker, but the kind with four wheels), since he is falling with a cane. Injuries from a fall are the last thing he and you need. You might also start looking into manual wheelchairs.

Best,
Laurie

 

[michelleann80]

Thank you both for all that information! @Mike- he is not a veteran. I will absolutely take a note pad, and have some questions written down already! Laurie, thank you for your suggestions, I will definitely add your questions to my list. Very helpful! He is going to ALS Center to meet with one of the neuromuscular specialists at Wake Forest Baptist Health in Winston Salem. I really appreciate the responses!
I am new to the forum (forums in general), I would like to provide an update when one becomes available, may I do that in this thread? Thank you again!

 

[Atsugi]

Absolutely, it's good to stick to the same thread. Good luck.

 

[michelleann80]

Thank you again!

 

[Jeanau]

Good luck Michelle...stay as calm as you can and write everything down. It is a very scary process. My thoughts are with you.
Audrey

 

[Dusty7]

Get copies of all his tests, especially the NCS and EMGs. Some places will have them immediately; others may take a week to ten days for your copies. You should get the results verbally immediately.

Ask questions. Remember that ALS is a disease of widespread, acute (current) and chronic (old) denervation. It sounds like his symptoms are mainly in his legs, but the EMG will locate other denervation if there is any. Ask how widespread it is and which muscles show acute and/or chronic denervation. Good luck!

 

[michelleann80]

Thank you Audrey, I appreciate it! Thank you as well Dusty, I have made a note to get copies of the tests he has already had, and also added the question you provided in your response to my question list. Thank you everyone!

 

[gooseberry]

Going forward, regardless of what this turns out to be, you will want to keep a binder with all the lab reports, scans, clinic notes, emg reports, pulmo notes,etc together divided by tabs. It helps everything stay organized. I put the discs for all xrays, and scans in a pocket that zips in the binder so they can be viewed an uploaded. Neuros like to see the scans themselves.

Bring some snacks for both of you and water . Your purse will become a tote

Good luck tomorrow. Steph

 

[michelleann80]

Hello everyone. I wanted to provide an update of today's visit with at the Diagnostic Neurology Center today. The neurologist he saw, is also the Director at the ALS Center in our town. After examining him and reviewing all the blood tests, nerve conduction study results, he stated that he believes that the probability of him having ALS is high. He did say he has been wrong (although it is rare), and that he hopes he is, but that the next step is to have a spinal tap done. He told us if there is inflammation, then it is not ALS, if there is no inflammation, then he will be seen at the ALS Clinic. He is certain that he does in fact have a motor neuron disease. The spinal tap is expected to be some time this week. Will update when I have more information. Thanks again for everyone's help!