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djk

Brachial Amyotrophic Diplegia / Bilateral Monomelic Amyotrophy

Posted by @djk in Brain & Nervous System, 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?

tommel likes this
tommel

Posted by @tommel, Nov 19, 2011

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.

Landrew and tommel like this
djk

Posted by @djk, Nov 23, 2011

Wow, your story does sound a lot like mine, but more severe. Although its size hasn't changed, my left calf no longer has enough power to lift my body, so I have a decent limp, but I have always attributed that to the aftermath of a couple of surgeries on the L5-S1 disc. I first noticed muscle loss about 6-8 weeks after the first lower back surgery, but no one in the medical profession seems to think the correlation is significant. I do get occasional fasciculations - all limbs. And the progression is slow, but relentless. I do seem to get plateaus where the condition stabilizes without improvement for months at a time, but deterioration always resumes, and at a seemingly quickening pace lately, perhaps as a result of another disc surgery, this time in the cervical spine. Have you had any spinal surgery? Or any spinal trauma (car wreck, etc) that could have resulted in a syrinx like that in one episode of House (the TV diagnostician with an attitude like mine, just more severe!) Thanks for sharing your story and I wish you and your wonderful wife well.

Landrew likes this
deliasanderson

Posted by @deliasanderson, Nov 23, 2011

hello DJK, the fact that you are being monitored by an endocrinologist sounds like you're as much on top of this as one can be. the destruction of the myelin sheath is in the research department and there really are few answers. diet and 'moderate' exercise are essential to keep up your strength. broccoli, summer squash, sweet potato are colorful and these colors help the immune system, plus these are high in protein and when taken with a brown rice (longgrain) will give you a complete amino acid. fruits and vegetables give a lot of vitamins but in order to give complete protein they do have to be eaten with a complementary food, e.g. whole whea bread or pasta, etc..., . meat, fish, eggs and dairy do provide complete essential amino acids that we need to function properly but, except for fish, the other 3 can cause plaque buildup if eaten in excess. so everything in moderation except some vegetables can be eaten whenever you like. let's cross our fingers for some breakthroughs in the research.

Landrew likes this
djk

Posted by @djk, Nov 24, 2011

Thanks so much, Delia. Like TOMMEL above, I have been blessed with a good and caring wife. In my case she's a health & diet enthusiast as well, who makes fruit smoothies everyday, and juices vegetables, too. I have passed your diet comments on to her. I am a man, so I figure I can find a "fix" if I try hard enough and I'm also an ex-athlete, so I get quite frustrated by the debilitating effects of this condition. It really is tough being told "no known cause; no treatment", but I definitely will keep my fingers (and toes) crossed 🙂 .....Dan

deliasanderson

Posted by @deliasanderson, Nov 24, 2011

since it's such a terrain with so few answers, if you and your wife come up with some good healthy snack and meal recipes perhaps you could share and maybe you could add how certain ones improve your health, if you've noticed.. i do believe the answer will come in the form of combinations of food. you sound like you're in
the wisest and the best hands.

djk

Posted by @djk, Nov 24, 2011

Believe me, if I ever find anything that causes any improvement at all I will post it here, as well as write letters to a whole lot of neurologists, endocrinologists, physiologists, neurosurgeons, etc !!!

deliasanderson

Posted by @deliasanderson, Nov 24, 2011

my relative, 10 months now was recently diagnosed with either alexander or krabbe, these are both leukodystrophies. the baby had been meeting all its milestones and a very insignificant lack of weight gain occurred after the 6th month but nether the dr or mom had any concern. it was only after her baptism which was a big affair that the baby girl sudenly stopped raising her head and sitting up. and just as suddenly she was diagnosed with leukodystrophy in the 8/9 month
she is the first child for a couple who both just turned 30. they are devastated. there is no treatment and they have their baby at home. this gives them some peace and comfort. as it was very hectic in the hospital with the battery of tests. it's like alzheimer's in a baby, very hard to come to grips with. the prognosis is bleak but i'm hoping as you said they'll come up with a 'fix'. i read online with respect to alexander that some children (WHEN IT'S DIAGNOSED LATER, THE LIFESPAN IS LONGER, but the earlier onset, the shorter the lifespan, this baby could (maye) have 5 more mos. if a cure isn't discovered) thrive on acai berry (mona vie) . i have picked her up a bottle and will be bringing it over to her. of course it's up to the mom if she wants to give it but there really is so little hope given by the drs. i didn't get the mona vie that these alexander children and parents recommend because that would take time and i can't find it in the local stores or the health food stores so i would have to order it online. my sister-in-law i just discovered in my hunt for a cure for the baby, told me that when she was recovering from her double lung surgery she took the mona vie acai berry juice for 3 yrs and she recovered remarkable. she had a quarter of one lung and 3/4 of another removed for avian pneumococal spores. she's never looked so great but it was a touch and go operation. so this was encouraging. she lives in the states and did order it online. i'm in canada and so is this baby. research, research, research and buy and cook healthy foods that's all we can do.

landrew

Posted by @landrew, Jan 29, 2013

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.

djk

Posted by @djk, Jan 30, 2013

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.

deliasanderson

Posted by @deliasanderson, Nov 20, 2011

have you seen an endocrinologist to check all your enzymes and proteins

Landrew likes this
djk

Posted by @djk, Nov 23, 2011

I am currently 60 years old. About 10 years ago I was diagnosed as being Type 1 diabetic, probably due to some auto-immune reaction to something. I have been on insulin and Synthroid and a few supplements (magnesium, fish oil, aspirin) since then. I visit the endocrinologist every three months and control my blood sugar very well. I'd hoped someone could tie this to some other auto-immune condition, but no endocrinologist, neurologist, physiatrist, etc has been able to offer any clue at all as to a cause or treatment of my condition. Thanks for considering my plight!

Landrew likes this
wheels34

Posted by @wheels34, Feb 28, 2012

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........

Landrew likes this
djk

Posted by @djk, Mar 2, 2012

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

Landrew likes this
wheels34

Posted by @wheels34, Mar 2, 2012

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.

Landrew likes this
djk

Posted by @djk, Mar 3, 2012

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!

Landrew likes this
clafata

Posted by @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

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