Old 09-08-2010, 02:36 PM #46 (permalink)
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Default Re: just diagnosed with motor neuron disease

Aly...did he only re-look at your fusion and not at the rest of your spine?

I don't want to give anyone false hope here...there is so much that goes into this diagnosis...but when my husband had the fusion for his broken back...they only looked there...they never looked at the rest of his spine. From my understanding...if you've had an accident...they should look at the ENTIRE spine as a course of protocol just to make sure there are no other areas of compromise.

I also think they should look at the nerve foramen to make sure that there is no nerve compression coming out of the spine...not just the cord and spine itself.....

Boy, are these threads bringing back floods of emotion!
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Old 09-08-2010, 04:32 PM #47 (permalink)
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Default Re: just diagnosed with motor neuron disease

I have had everything imaged again to rule out the cervical thing and MS.

My husband just woke up so I happily told him that maybe it could be my neck, but he said "NO". Boo Hoo. I think I may have asked him that question more than once. He gets a bit fed up with me, so I seldom mention any of this stuff. Just vent here instead. Try to help with my Neuro knowledge if people get really scared. I hate people waking up every morning scared. I did it for a while when MND was first mentioned by my hubby. But I just will not fall into that evil trap again.

Ranting again sorry. Your info about this back stuff is very very helpful to all. Never give up telling people with back/neck issues about it. Its so very important and much more common that ALS/MND
Bless you Aly
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Old 09-08-2010, 06:05 PM #48 (permalink)
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Default Re: just diagnosed with motor neuron disease

I just heard a misdiag story from a friend here. His uncle, a cardio surgeon in Spain, was diagnosed by one neuro as having ALS. The second opinion was negative though. They said he just had a "punctured" nerve (I don't know if that word is the right translation) in his arm, which is degenerative, but isolated, and could end his career. Anyway, he was so freaked out by the first misdiag that he spent a year getting more opinions, all negative, but the first neuro did say it looked like ALS.

Tracy, when you say look at the forearm also, with what type of technique do you mean?

I'll look into the other spine evaluations.

Kansas, Charlotte, about UMN signs, I don't know. I'll ask my neuro on Monday.

Thanks everybody. A lot of posts here, let me know if I missed a question.
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Old 09-08-2010, 06:18 PM #49 (permalink)
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Default Re: just diagnosed with motor neuron disease

Not forearm....foramen...which are the open areas from the spine that the nerves exit from the spinal cord to travel to the rest of the body.

Sometimes you can get bone spurs or inflamation or other impediments (we had a small sack of excess fluid that was showing in one of Jim's that they even had to check) that will close in those openings and pinch the nerves.

I would think that you want to start by looking at all of those issues that were seen on your MRI's though...you already know you have issues there. It's just how closely you can have them look at them. As I said a focused area on a 3 tesla MRI machine showed zeroed closely in at Jim's herniation is what finally showed signal change in his spinal cord...everything until then showed compression but looked unremarkable to a radiologist. You need to have them focus in on each problem area individually to get a close enough view.

Use us as an example if you need to so that they can see that something that looks remarkable on an image, but is listed as unremarkable on a radiologists report....can cause HUGE problems. Jim is now a paraplegic because of the delay in treatment that that ALS diagnosis caused.

Keep us updated!

I'm wishing the best for you!
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Old 09-08-2010, 06:46 PM #50 (permalink)
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Default Re: just diagnosed with motor neuron disease

Okay, thanks, I thought that was a typo.
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Old 09-08-2010, 11:21 PM #51 (permalink)
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Default Re: just diagnosed with motor neuron disease

Marcus,
The cervical spinal problems could be causing your fibs in your arms,shoulders,etc.,but not really possible (I was told) to cause the anterior tibialis fibs.That could be a lower area spinal compression.

Aly, now you got me going with the 3Tesla? Interesting.

Marcus, look online at Phage Therapy.Let me know what you think.

Maybe, we could have a fundraiser to get money to get you cured of your MRSA.
Flesh eating bacteria could be the basis, but I definitely agree your neck damage is severe.

I have thought if I amputated my bad leg,that could save me,at least I could stay ambulatory(prosthesis).It's all very frustrating.We are all too young for these problems,but you are really too young for them.

I sure hope you are organizing all these thought provoking ideas.Do you have a plan?
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Old 09-09-2010, 12:09 AM #52 (permalink)
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Default Re: just diagnosed with motor neuron disease

It can cause problems in your legs but not unless there are signal changes in your spinal cord, rather than the nerves exiting through the foramen.

Aly
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Old 09-09-2010, 02:23 PM #53 (permalink)
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Default Re: just diagnosed with motor neuron disease

Wright said that the scarce fibs in my leg could be a red herring, and somebody else said that they might have even been a mistake because fibs are very difficult to detect. And I have no leg symptoms. The neuro even said that she didn't see any leg or tongue problems, it was only in the written report I got later that the "scarce fibrillations in right tibialis anterior" were mentioned. What I realized though while I was typing up the report for Wright is that it claims only my right leg was tested. But she did both. So I don't know if that means I only had fibs in one, or both, or neither.

Anyway, I've independently confirmed that the doc I'm seeing on Monday is considered the best in MND, and is internationally known. My friend who's cardiologist uncle in Spain was misdiagnosed with ALS came here to see this same neuro, who gave an accurate diagnosed. So if he gives me bad news it's going to be scary. I'm guessing though he'll probably send me for more imaging tests, since he's probably more cautious about throwing out quick diagnoses.

Charlotte - I'm not going to worry about MRSA treatments unless I am tested positive. I think it's a very very unlikely. I've found no info on a CNS infection giving a false MND diagnosed. To have survived a nervous system infection, and not shown any signs but a weak hand, then had two boils on my skin, which is where it should start - is pretty bizarre. Do you know how a CNS infection is tested for, does the normal nasal swab work or would it require a spinal tap? I doubt I have the money for a spinal tap, but we'll see if a doctor will even prescribe me one. You know, I can't just demand a spinal tap. And it's not like I have any symptoms of staph. Yes, the boils were very likely staph, but that's just the skin. Being infected in my CNS for years before that really doesn't make sense.

I'm wondering if MND or whatever caused my forearms to ache and burn like they made my skin vulnerable to infection, and as I spent a lot of time on sweaty gym seats and wrestling mats I was exposed, got the skin abscesses, they went away and that was that. Causing years of twitching and cramping and then weakness, and then suddenly boils?
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Old 09-09-2010, 02:55 PM #54 (permalink)
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Default Re: just diagnosed with motor neuron disease

Just another comment...the doctor that MIS-diagnosed my husband with ALS is THE ALS specialist here. An MND doctor is not a specialist in spinal cord issues...for that matter our orthopede is not an expert in cord issues but rather knows more about the spine itself. He was wrong..he was THE specialist..and he was WRONG!

We've heard several comments like "be careful which specialist you go to because you have a high percentage of having his/her specialty when you walk out the door", or "when you're an anteater, all you look for are ants", or "when you're a hammer, all you see are nails"

We were sent to this "specialist" from Dr's who said we think it's ALS...can you confirm?...so he did.

YOU need to go to a doctor saying I think I have spinal cord issues...let's try to prove that and exhaust all avenues. DO NOT go in for them to look for ALS! PLEASE heed this advice!

It was a combination of our GP, a COMPETANT neurologist, and neurosurgeons who finally helped us.

I hope this new neuro is as great and thorough as our final neuro and not hasty is a diagnosis and willing to search and exhaust the possibilities before throwing out a diagnosis.

Tracy

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Old 09-09-2010, 07:15 PM #55 (permalink)
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Default Re: just diagnosed with motor neuron disease

Okay, thanks Tracy. I came into the world with a false diagnosis, completely false. I was a big, healthy baby but I spent my first three weeks in an incubator.....for nothing.

I did start in this by saying I had an injured neck that had moved down into my hand, when I was seeing the pain specialist and then the neuro he sent me to. I make sure I start with my neck because I didn't want them to jump to the conclusion of carpal tunnel syndrome or such. I've pinched a nerve in my neck (I think that's what it is) maybe over 100 times in the past 14 years, much more often when I was still working out, with each episode lasting about a week, so that's a lot of time for damage the peripheral neuropathy, if I understand correctly and that is what can happen.

Considering my neck history and my slow progression, I would think it wouldn't be too hard to make a doc consider something besides MND.

The person I know second-hand did get the correct non-ALS diagnosed from this neuro after being misdiagnosis with ALS.
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Old 09-09-2010, 11:28 PM #56 (permalink)
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Default Re: just diagnosed with motor neuron disease

MRSA likes to live in the sinuses and can sometimes be detected by a nasal swab,sometimes bt urinalysis.Call an infectious disease specialist and ask the secretary how much and what kind of tests they do.Cost.

Your neck is obviously in bad shape.

I'm not going to say anymore.I'll definitely pray for you.
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Old 09-14-2010, 06:15 AM #57 (permalink)
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Default Re: just diagnosed with motor neuron disease

Update:

The "expert" guesses I have Hirayama disease. It's a rare disease found mostly in Japan and India. That's something I read about before, and it sounded possible, but then when I read more about it, it didn't sound right. Fasciculations (muscle twitches) are not supposed to be a sign, and I have them in all my arm muscles.

I've read a lot about it. It only occurs in males age 15-25, and lasts for 2-5 years, then you won't get better, but the damage is done. It usually affects just one arm. It's caused by bending the neck, maybe because the vertebrates and spinal canal don't grow together right. There is no pain involved. They can sometimes prevent damage by putting you in a neck collar for a few years or surgically fusing vertebrae.

So this would not explain my neck pain, plus when my hand went weak there was pain
involved, burning and aching in forearm, or the fasciculations in the EMG.

And he's talking about treating it as if it were ongoing, even though I don't seem to be getting worse and Hirayama shouldn't be still happening at my age.

He said he thinks the MRI does show significant spinal fluid blockage, and wants me to
get another MRI in which my neck is bent. And he gave me a prescription to get fitted
for a neck collar too. But instead of believing my wrestling injury theory he kept talking about Hirayama.

Well, I'd like to see this next MRI, hope it doesn't cost much more than the last
one.

He said he can't be sure it's not ALS, but he thinks it isn't, because
it's been so long. Obviously I knew that, but I know young adult males can get slow
progression cases of ALS, that can stay in one limb for years and then spread. Even by
those standards I would still be an unusual case, but I'd be an unusual case of Hirayama
too, and Hirayama is much more rare than ALS to begin with.

He also said there is nothing wrong with my blood tests, but I noticed I have a high
level of bilirubin. I have .49 mg/dl direct bilirubin and 2.35 total. The range is listed right there on my results: .01 -.3, and .3 -1.0.
Apparently it gets much higher than that in people with liver problems, but it's still
high and he didn't mention it. Everything else is normal.
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Old 09-14-2010, 09:19 AM #58 (permalink)
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Default Re: just diagnosed with motor neuron disease

buenos,

I'd suggest you continue pursuing the neck injury angle. In fact, probably send Tracy a message about your appointment, although she may have nothing new to offer from their personal experience. The spinal fluid blockage, just by the very fact that he noticed it, but it went unmentioned previously, is something.

The other thing, is a person (sadly) can have more than one thing wrong at a time, and we can't always tie all of our symptoms together. Its when they happen to converge enough to muddy the waters, which is why getting as many opinions from specialists as it takes, for you to feel confident that they've got it right, is extremely important to follow through with.

good luck to you! it seems like you did not get "bad" news, just incomplete, raising more questions news...
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Old 09-14-2010, 10:35 AM #59 (permalink)
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Default Re: just diagnosed with motor neuron disease

Rose has a good point. You very well could have more than one bug in the soup complicating the diagnostic process.
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Old 09-14-2010, 03:08 PM #60 (permalink)
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Default Re: just diagnosed with motor neuron disease

Rose and Zaphoon are both right, I believe.

If you sense this uncommon phenomena to be inaccurate and pointing in the wrong direction, it probably is. I did find out the Tesla3 would preceed a mylegram in diagnostics, but both would be beneficial in chronology regarding your neck issues.

Did you mention the Mrsa, or are you dismissing it?Sorry I persist Marcus.

How do you feel?
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