Anyone received ALS misdiagnosis of Upper Motor Neuron signs

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Music67

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Has anyone here first received an ALS (mis)diagnosis of Upper Motor Neuron signs only to still have positive response to an Ivig?
 

JimInVA

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I'm not sure that I completely understand what you've tried to ask... but my PALS did have some experience with IVIG. She was originally diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). This was an autoimmune deficiency wherein the body's immune system begins to attack the myelin sheath around the nerves. Just as a wire has an insulator around its core, our nerves have the myelin sheath around the nerve's axon. When it is damaged (i.e. the immune system becomes confused and begins to munch on its own nerves), the signals that run from spinal motor neuron, through the nerve path to the muscle begin to lose signal strength. As a result, muscles don't move as well as they did previously. If the "munching" continues unabated, the axon itself can be severed. When that happens, the signal may no longer get to the muscle at all.

IVIG treatments infuse good immunoglobulins into the body. The expectation is that the confused immunoglobulins will say, "Hey look! Reinforcements have arrived. We can stand down now and let them do the work!" Eventually, the hope is that all of the "nerve munching" ceases and the nerves can begin to heal. Though a slow process, axons can regrow and reconnect... and the myelin sheath can rebuild.

My wife was on IVIG treatments for a year. During the last 3 or 4 months of that year, she was on a 4x dosing (spread over 4 days). At no time did her symptoms lessen, her decline halt or did she feel better from the treatment. After a year of continued decline and a doctor who was adamant that she did not have ALS (even after indications of motor neuron disengagement), we asked to be referred to Johns Hopkins for an alternate opinion. It was there that she was diagnosed with MND/ALS and the IVIG was exchanged for Riluzole.

I don't know if that helps any... but I hope you find the answers that you're looking for...

Jim
 

Music67

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Hi JimVa - Yes your response was helpful. I guess what I am wondering how accurate certain diagnoses actually are. I was just told by one neurologist that since he thinks I have both upper & lower motor neuron signs in one limb that an ivig would not work while another hospital, already having the same info on me, is considering giving it to me anyway.
 

MaxEidswick

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>I guess what I am wondering how accurate certain diagnoses actually are.

most neuros are quacks -- especially ALS quacks. period.
 

JimInVA

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I've been a computer hobbyist for almost 40 years. I've owned a computer company since 1988 and have diagnosed well over 1,000 computers in that time. Sometimes, I can't prove to myself (and I absolutely must be the first to be convinced) what exactly the problem really is... even given reliable symptoms. For those times, I instead have to prove what does not have a problem (i.e. what DOES work) so as to eventually eliminate working items to narrow in on the faulty (or intermittently faulty) item.

I think a diagnosis of ALS is somewhat similar to the latter method. When they've run through and believe that they have effectively disproved other maladies, they are only left with MND/ALS as the remaining possibility. Perhaps it would be easier to diagnose if everyone showed identical symptoms and progression... but that is not the case. Our first neurologist retired from the Mayo Clinic with (we understand) a very good reputation. He only worked 2 days a week with patients he selected to work with. He was adamant that Darcey did NOT have ALS because of the way she presented. Before moving on to Johns Hopkins, he was suggesting it might be some polio related illness. Honestly, I believe that it is difficult to know for sure. And while I do not believe (as Max does) that all docs are quacks (though I absolutely support Max's right to his belief), I do believe there is no exact science for determining what exactly we're dealing with until we're well into it and one's symptoms have fully revealed themselves. When we understand this disease to effectively identify it, we'll be far enough along to have or be close to a means to treat it. Or so I believe...

Jim
 

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>that all docs are quacks

most -- quack quack :)
 

affected

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I found Jim's explanation exceptional.

By the time my Chris was diagnosed I think nearly any quack should have been able to figure it out. But in the first 6 months, like for so many here, the early symptoms had their own characteristics, onset and progression.

So have you started the IVIG music?

I just noticed there are 3 nearly identical threads here by you, just a word swapped around now and then?
 

Music67

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Hi affected,

No, I haven't been given the green light yet on the ivig. The VA said "no" to the ivig because of the upper motor neuron diagnosis so the ball is now in the Virginia Mason Hosp.'s corner and I won't see them til Aug 20th. The last I had heard a couple of weeks ago Virginia Mason, who earlier had told me that I had upper motor neuron, said they were going to go ahead with the treatment anyway. If they now rescind that promise because of the VA visit (who they seem to be in contact with) I will consider paying for a treatment out of my own pocket so I will know for sure one way or the other.

As for the duplicate postings - the earlier ones didn't appear for awhile so I thought I might have not posted them properly.
 

JimInVA

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Be sure and wear those pants with the big pockets if you elect to pay for this on your own. Our first IVIG treatment was over $30,000. Subsequent monthly single treatments ran about $12,000 each...
 

Music67

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You're right Jim, but if the first one works then I would assume that all subsequent treatment costs would be picked up.

I'm just trying to find someone here who now has an mmn classification but at one time was told they had both upper & lower motor neuron signs. My theory is that these conditions are not always a definitive sign of ALS or that the neurologist can misdiagnose this condition.
 

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I was diagnosed in May of this year with possible als, or mmn. Even though I have upper motor neuron symptoms, and my blood work showed no autoimmune activity, I was given 5 days of IVIG three weeks ago, and next week have another round for 5 days. My HMO covers the cost completely. It may as well have been water, as there was absolutely no feeling good or bad from the infusion, and no improvement afterward. I think I am getting it as a diagnostic tool to rule out the MMN possibility. My neurologist will discontinue it if I get no improvement.
 

Music67

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Hi Steve, I think I'm probably in the same boat as you are. The trick with the insurance is to not have an ALS diagnosis before the treatment is requested so coverage is available as I know that (In my case) Group health probably wouldn't cover it otherwise. I'm sorry you haven't had any improvement.

At least mine hasn't spread beyond my left ankle, hand, and arm in over 2 1/2 yrs. Today I got a pretty nice ankle support - the type that inserts into your shoe & up your leg about 12 inches.

Could have used it last Tues. evening as I entered my men's group meeting at church. Since I was late getting there about 150 guys glanced at me walking in as I caught my left foot toes on a ripple in the rug and took, what I call, a nice "trip over my weekend" (!) I went flying to the floor and layed there trying to get my composure for what seemed like eternity. One guy stuck a small flashlight in my eyes to check my focus. I got up & seemed okay a minute or so later but the next day my ribs on my weak side (my strong side took the fall) hurt whenever I coughed, sneezed or laughed (still does) but otherwise I don't ache at all. Such is life. . .
 
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