1. < Brain & Nervous System

Brachial Amyotrophic Diplegia / Bilateral Monomelic Amyotrophy

Posted by DJK @djk, Nov 10, 2011

The neurologists at Mayo categorize my changing symptoms as listed in the subject of this message. Over the last 7 years or so I have been tested for things like Lyme disease, HIV, heavy metals, auto-immune, etc, etc at other very reputable institutions as well. For years I simply had weakness with some atrophy in my left arm, but in the last year it has spread to the right arm/shoulders, and back and is more severe than ever. I have lost about 20 pounds of tissue - mostly muscle! Although doctors may change the label they put on my condition, they all say they have no clue what is causing it, so there is no treatment. Apparently there are no research studies either. All efforts appear to go towards ALS, which is admirable, but since I have only lower motor neuron involvement, seemingly with no upper motor neuron involvement, I am left to my own devices to deal with this situation and no help from the medical establishment.

Anyone else in the same boat? What are we going to do?

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

DJK | @djk | Mar 2, 2012
In reply to @wheels34 "I'll jump in with a remarkably similar tale! I noticed a similar drop in August, after..." + (show)
@wheels34

I'll jump in with a remarkably similar tale!

I noticed a similar drop in August, after a month of what I thought was back problems or peroneal nerve damage. A trip to the orthopedist, some xrays and MRI's, and a visit to the neourologist landed me in the OR with a surgery in the L5-S1 spinal region. The foot drop was thought to be caused by nerve compression, and that the surgery would help improve what was thought to be spinal stenosis. Less than 3 mojnths later, I have lost an additional 20 lbs, and have had the "we think you have ALS" speech from 3 doctors in the past few weeks.

I can now walk (barely) with the aid of a Rollator; I have had any number of internal tests (upper GI, colonoscopy) and lab work, showing all functions normal, including thyroid, glucose, liver, kidney, and no celiac or malabsorption issues. I have lost nearly 50 lbs since Nov 2010, now tipping the scales at 155 lbs (6'0", 48 yo) - and have been told to eat whatever I want.

The fasciculations race across my torso and thighs- but not in my effected foot (interestingly).or above the neck.(thankfully). Like TOMMEL (below), my job is understanding and not physically challenging. Like DJK, I get a lot of shrugs, inconclusive diagnosis, and "There IS something going on - I'm not sure WHAT." I joke that I have a crack medical team, headed up by Scooby-Doo.

I meet with the Gehrig ALS Center at Columbia later this week, and am hoping they may be able to come up with more conclusive info and (optimistically) about how to treat it. I wonder if there is some connection between the OPs condition and my predicament........

Jump to this post

Thanks for sharing your story. I wish you well, and good luck, with hopefully an answer or two at the ALS Center.

REPLY
wheels34 | @wheels34 | Mar 2, 2012
In reply to @wheels34 "I'll jump in with a remarkably similar tale! I noticed a similar drop in August, after..." + (show)
@wheels34

I'll jump in with a remarkably similar tale!

I noticed a similar drop in August, after a month of what I thought was back problems or peroneal nerve damage. A trip to the orthopedist, some xrays and MRI's, and a visit to the neourologist landed me in the OR with a surgery in the L5-S1 spinal region. The foot drop was thought to be caused by nerve compression, and that the surgery would help improve what was thought to be spinal stenosis. Less than 3 mojnths later, I have lost an additional 20 lbs, and have had the "we think you have ALS" speech from 3 doctors in the past few weeks.

I can now walk (barely) with the aid of a Rollator; I have had any number of internal tests (upper GI, colonoscopy) and lab work, showing all functions normal, including thyroid, glucose, liver, kidney, and no celiac or malabsorption issues. I have lost nearly 50 lbs since Nov 2010, now tipping the scales at 155 lbs (6'0", 48 yo) - and have been told to eat whatever I want.

The fasciculations race across my torso and thighs- but not in my effected foot (interestingly).or above the neck.(thankfully). Like TOMMEL (below), my job is understanding and not physically challenging. Like DJK, I get a lot of shrugs, inconclusive diagnosis, and "There IS something going on - I'm not sure WHAT." I joke that I have a crack medical team, headed up by Scooby-Doo.

I meet with the Gehrig ALS Center at Columbia later this week, and am hoping they may be able to come up with more conclusive info and (optimistically) about how to treat it. I wonder if there is some connection between the OPs condition and my predicament........

Jump to this post

Thank you! My meeting was......inconclusive! "I can't say definiteively that you HAVE ALS. But, I can't say that you DON'T have ALS, either" said the doctor. I am now going to attend their "open clinic" next month, and meet with their team (cardiologist, social workers, etc.).

They said that some of my sympoms are consistent with ALS; others are not. While not necessarily positive, at least they are taking a "wait and see" approach. It seems that there is defintiely some form of neuromuscular disease - they just don't know which one, or if there will be any recovery.

I hope for the best.

REPLY
DJK | @djk | Mar 3, 2012
In reply to @wheels34 "I'll jump in with a remarkably similar tale! I noticed a similar drop in August, after..." + (show)
@wheels34

I'll jump in with a remarkably similar tale!

I noticed a similar drop in August, after a month of what I thought was back problems or peroneal nerve damage. A trip to the orthopedist, some xrays and MRI's, and a visit to the neourologist landed me in the OR with a surgery in the L5-S1 spinal region. The foot drop was thought to be caused by nerve compression, and that the surgery would help improve what was thought to be spinal stenosis. Less than 3 mojnths later, I have lost an additional 20 lbs, and have had the "we think you have ALS" speech from 3 doctors in the past few weeks.

I can now walk (barely) with the aid of a Rollator; I have had any number of internal tests (upper GI, colonoscopy) and lab work, showing all functions normal, including thyroid, glucose, liver, kidney, and no celiac or malabsorption issues. I have lost nearly 50 lbs since Nov 2010, now tipping the scales at 155 lbs (6'0", 48 yo) - and have been told to eat whatever I want.

The fasciculations race across my torso and thighs- but not in my effected foot (interestingly).or above the neck.(thankfully). Like TOMMEL (below), my job is understanding and not physically challenging. Like DJK, I get a lot of shrugs, inconclusive diagnosis, and "There IS something going on - I'm not sure WHAT." I joke that I have a crack medical team, headed up by Scooby-Doo.

I meet with the Gehrig ALS Center at Columbia later this week, and am hoping they may be able to come up with more conclusive info and (optimistically) about how to treat it. I wonder if there is some connection between the OPs condition and my predicament........

Jump to this post

Wow. We are definitely in the same boat. Started with L5-S1 surgery and is progressing with inconclusive ALS-like symptoms. All the testing I've had seems to show only lower motor neuron "involvement". The inclusion of "upper motor neuron involvement" would be ALS by definition, or so they say.......

Please post any updates as more tests and opinions roll in. Thanks!

REPLY
Landrew | @landrew | Jan 29, 2013
In reply to @tommel "Sounds a bit familiar. Seven + years ago I noticed my left foot flopped on the..." + (show)
@tommel

Sounds a bit familiar. Seven + years ago I noticed my left foot flopped on the pavement when I walked. Went to a neurologist a few months later. Later went to Barnes-Jewish for second opinion. Went to Mayo in 2009. They all say the same thing: progressive motor neuron disease, probable ALS.
Almost no muscle left in left leg. Now its the left arm losing noticeable amount of muscle. Limited function in left hand. Deterioration is slow but it doesn't stop. Fasiculations never stop - all limbs.
No treatment available. I take some supplements that have debateable research backing. Otherwise, not much to do except eat well, exercise moderately and get enough sleep.
My job doesn't have much physical challenge, so I'm still hanging on there.
I'm thankful that I'm still able to enjoy life with a lot of help from my dear wife.

Jump to this post

A lot of these stories sound a like and all have one thing mostly in common is the lack of a sound diagnosis. 4 Years ago I started to have feet that felt like they were freezing and then numbness set in and spread to my ankles and then knees. Weakness and extreme pain below the waist. Brain and spinal MRI shows no problems other than some mild degenration of L4 and S1. My doctor was sure I had MS until he read the MRI, now he is not sure. In the mean time I have been put on all the popular nuro drugs with little help. I have to use afo's for foot drop but now will have to go to KAFO' s because my quads are failing and cannot support my weight even though I lost 20 pounds to help lessen the load. At 58 years old and having been through a similar problem not related to this, and remembering all the crap I went through and 5 years later finally getting it resolved I vowed to never to chase a medical problem like that again unless my life depends on it.

To all of those that are suffering from medical hopelessness, I hope you resolve your problems so you may enjoy life to the fullest and never give up except when it's in your best interest to do so.

REPLY
DJK | @djk | Jan 30, 2013
In reply to @tommel "Sounds a bit familiar. Seven + years ago I noticed my left foot flopped on the..." + (show)
@tommel

Sounds a bit familiar. Seven + years ago I noticed my left foot flopped on the pavement when I walked. Went to a neurologist a few months later. Later went to Barnes-Jewish for second opinion. Went to Mayo in 2009. They all say the same thing: progressive motor neuron disease, probable ALS.
Almost no muscle left in left leg. Now its the left arm losing noticeable amount of muscle. Limited function in left hand. Deterioration is slow but it doesn't stop. Fasiculations never stop - all limbs.
No treatment available. I take some supplements that have debateable research backing. Otherwise, not much to do except eat well, exercise moderately and get enough sleep.
My job doesn't have much physical challenge, so I'm still hanging on there.
I'm thankful that I'm still able to enjoy life with a lot of help from my dear wife.

Jump to this post

Now I'm wondering how to get a diagnosis for "Tethered Spinal Cord", perhaps due to my L5-S1 discectomies. The second surgeon said there was a lot of scar tissue. I would have thought MRIs, especially at Mayo, would have found that, but now I'm wondering if I need an "expert" in TSC to look specifically for it.....or a syrinx. I'm pretty sure my symptoms are related to trauma, but no one has stumbled on that yet.

REPLY
Camille | @clafata | Oct 19, 2014

You should talk to your Doctor about BAD....
Bibrachial amyotrophic diplegia, I think that is what you have. It is know as "man in the barrel syndrome" good luck

REPLY
maribren | @maribren | Mar 17, 2018

I had c-4-c7 disk replacement surgery due to belief arm weakness was result of stenosis. No relief instead symptoms worsened and became bilateral. Docs say believe my problem is BAD variant of ALS but I don't have all symptoms. As of now only lower motor neuron involvement...any updates from similar posts.

REPLY
Kanaaz Pereira, Connect Moderator | @kanaazpereira | Mar 18, 2018

Welcome to Connect, @maribren.

I'm sorry to hear about your diagnosis, and so glad you've reached out to the Connect community for information and support. I sincerely hope @clafata @djk @wheels34, and others in this discussion, will return to share their insights with you.

I found an interesting published study about ALS regional variants which you may also wish to view: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4629514/

Has your doctor outlined any next steps for you, @maribren?

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