Husband's journey

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KitB

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Jul 18, 2024
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Learn about ALS
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US
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NC
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ASHEBORO
My husband had a fall in May 2022 when we were out of town. He reported that his left leg just gave out. We didn't think about it afterwards until he had a couple of falls in 2023 while out walking out dog. He had been dealing with neuropathy and B12 deficiency which was being addressed by our primary care physician. In December 2023 the falls became more frequent and the left leg was experiencing muscle weakness. PC ordered physical therapy and occupational therapy which provided no benefit. He began using a cane in assisting walking. By February 2024 left hand and arm weakness developed, left leg was considerably weaker and aller in muscle mass. May 2024 he uses a rollator for walking and falls a minimum of 2x a week. It takes me and generally one other person to get him up.
We finally got a neurologist appointment and the preliminary assessment resulted in her saying "until I get more test results, I will not tell you what it might be". He had a head MRI but Dr has ordered neck, upper and lower back MRI as well as nerve conductivity tests.
This is very scary and not having any idea is adding to the fear.
 
Hi, Kit, I certainly understand your concern. If it is ALS, it's been progressing slowly. Unless he's vegan, takes metformin, and/or is north of 65, isolated B12 deficiency is not all that common -- was the cause found? Has the deficiency been corrected? And does the current neuro have all these records?

A myopathy is another possibility, though admittedly less likely given the leftsidedness of things, and that, too, can be seen in an EMG. And of course the MRIs are to rule out disk damage, tumors, and other spine issues. There are other systemic diseases that could play in.

My main concern at the moment, since the results will be what they will be, would be the falls, which can cause permanent damage. If he is falling twice a week, I would look into a manual wheelchair, which you can buy in person or on line, to use wherever most of his falls are, or debug what's making him fall in some other way.

When are the tests scheduled? If there is a delay, you have the option to try to get testing at Duke or UNC, depending on your network, or really anywhere you are willing to drive to. You can also ask to be on the cancellation list wherever you make appointments.
 
Thank you so much for your reply. We are on a wait list for Duke neurologist as we have a Jan 2025 appt!
Hubby is T2 diabetic and is on metformin. He is 72 yrs old and been diabetic for 30 yrs.
The B12 deficiency has been dealt with by I injections which began as weekly and now are monthly.
We are currently working with neuro at Cone. First appt was yesterday and while she is thorough the fear is alive with knowing the left side weakness and now some right side weakness beginning is unexplained.
We understand the need for additional testing and pray that answers will be forthcoming.
I guess I am looking for support for what I fear is going to be a challenge.
 
What about UNC? Even Charlotte or Wake? January doesn't sound like a good option, agreed. You can always make multiple appts and cancel once you actually get in somewhere that's a fit.

You have the support of everyone reading this, I am sure. No question is too large or small. But I would tackle the falls first.
 
Thank you so much for the reply. We are addressing the fall safety externally with the rollator, which he has not used when he has fallen. The use of it has eliminated the falls, except he gets stubborn with using it in public. I believe the fall yesterday in Tractor Supply fixed that for him.
As for neurologist, the Guilford Neurology Center has phenomenal reviews. Since we were not able to be seen before January by Duke we looked for high rated neuro who might have earlier availability. That being said, we are being cautious and have kept and will keep our Duke appointment, which was also encouraged by neurologist at Cone/Guilford. Getting the ball running on finding out what is going on has been tantamount to hubby feeling as if he has some control.
 
I wanted to provide follow up... Blood work results show high WBC count and a couple other results abnormal or high.
The MRIs are scheduled as are the EMG and nerve conductivity test.
We are very pleased with Dr Yan at Guilford Neurology.
 
I am glad you have a neurologist you trust and they are doing what sounds like an appropriate workup. Once you have results and a diagnosis you may have better luck getting into the appropriate specialist neuro. I think Duke ALS is just hard to see quickly but bigger clinics will often prioritize provisional diagnoses. I think if the diagnosis is something else that is likely true for other specialists

Very glad he is taking falls seriously. If this is progressive be alert that needs and challenges constantly change so what works now may not next week or month. Quick note should a wheelchair be considered do not use insurance. They usually only pay for one every five years. Save the benefit and pay cash or get a loaner. You can often get secondhand ones cheaply
 
Again thank you for the insight.
It is so interesting that I work with pts who are dealing with their loved ones and now it is here with me. Humility comes in so many ways.
Right now the challenges are moving furniture out so he can have room, and putting safety items in place: grab bars, shower seats, step stool with handle and all rugs removed. Everyday is a new deficit but manageable.
We are keeping the Duke appointment as our second opinion but looking forward to at least feeling like progress is being made rather than the hurry up and wait we experience here. There are times we really miss Chicago!!!
 
Just a follow up. Second set of MRIs scheduled tomorrow at Cone and on 21st muscle and nerve conductivity tests scheduled with Neurologist. Husband reports difficulty in swallowing now and inability to move head to the right or left in normal manner.
 
I wanted to thank everyone here for their support and guidance thru this journey. The neurologist has informed us that the MRI results have cleared the fear of ALS as a tumor encompassing C3-C5 has been detected. A referral for neurosurgeon has been made.
Again thank you everyone.
 
Thank you for letting us know. Wishing you both all the best
 
Wanted to put a last post in. Surgery has been done, tumor removed. I really wanted to share what our neurosurgeon shared with us.
Symptoms began for my husband approximately 10 years ago, as we discovered doing a medical timeline. Neurosurgeon often sees people who are convinced the have ALS (much like we were).

The very first symptoms are an electric like jolt that goes from the shoulder down the arm, when trying to push one self from a laying position. Because as the tumor grew in cervical spine, the high rent district of nerve control began to imitate symptoms like ALS.

The doctor advised if more patients were to describe this one sensation when talking to their general practitioner, it may prevent the agony of needless worry, as this is the classic symptom for cervical spine tumor, which is very treatable.

This is being shared just a note of info so that maybe one more person doesn't have to go through this experience. We were advised if we had not discovered this tumor when we did, it would have resulted in paralysis of the diaghram and or heart.

Your encouragement for neurologist follow up lead us in the healing direction. Thank you.
 
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So glad it worked out as it did, Kit, with best wishes for his recovery. Thank you for circling back with this information.
 
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