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Thanks Kansas and Sammantha

Wright - Thanks for the help. I'll type up the EMG/NCV report below. My blood test results and next neuro appt. are next Monday, not yesterday. As far as why I went to a neuro recently, I've been seeing chiropractors, osetopaths, and such off and on for years, and I was seeing a pain specialist doctor recently, who referred me to a neuro after he couldn't help me himself. Another reason I finally went to a neuro is that I'm in a country where it's much cheaper to get medical treatment than in the US, and I don't have insurance or a lot of money. Argentina is a well-educated country, and BA is a huge city with some high quality universities, so I think I'll be able to get good attention.

Every time I read this I get a sick feeling:

Explored muscles: Bilateral deltoid, biceps, extensor digitorum communis, first dorsal interosseous, abductor hallucis and abductor digiti quiniti. Right tibialis anterior and mouth floor muscles.

Spontaneous activity: Fibrillations and fasciculations in all the muscles of upper limbs. Scarce fibrillations in right tibialis anterior.

Intermediate-simple activity, with giant motor unit potentials (MUP) in the first dorsal interosseous and abductor hallucis bilaterally, with right predominance. Intermediate activity with bi and thiphasic, low amplitude MUP in both adductor digiti quinti (atrophic). Intermediate rich activity, with excessive mutliphasic MUP in bilateral deltoid and biceps. Normal activity in the remaining muscles explored.

Conduction velocities:

Nerve Right Median Right Ulnar (mot.) Right Ulnar (sens.) Left median Left ulnar

DL (mseg) 3 3.2 2.3 2.9 3.1

Ampl. (mV) 23* 0.6* 0.08 14.59* 1.2*

Max cv (m/seg.) 51.56 43.2 56.6 54.3 48.2

* No nerve conduction block

Conclusions: This study reveals a chronic neurogenic compromise of moderate degree, with denervatory activity, located in the anterior horn of the cervical spinal cord, constituting a motor neuron disease. Denervatory activity is observed in the right tibialis anterior, without other evidence of motor neuron diseases at this level.

Diagnosis: Active cervical motor neuron disease.

First one thing about MRSA, there are new reports of using cockroach brains as a 90% effective treatment, but when that will be available to patients, I don't know. That story is just hitting the news yesterday (the oldest report I saw was from Sept 3rd.)'s interesting, but like you said, the FIRST sign is a boil, and I got boils after my arms went weak, and I'd already had neck pain for SIX years, and finger twitching and forearm cramping for several years. Could it have gotten into my nervous system very early on in wrestling, never made a boil, then six years later popped up as two boils on my forearms just two weeks after my forearms started having problems? If the problem was in my central nervous system, why did I get skin abscesses on my arms? That would still be a weird coincidence, right? And why didn't I ever show signs of a major infection, I should have been in the hospital with a fever, no? Could it act this slowly?

But even if I had such a strange progression of MRSA (or another staph strain), since I've had no signs of infection in the past 7+ years, and haven't noticed my symptoms getting worse (despite by diagnosed with MND) could it have just damaged my nervous system and then been killed off or put in remission by my immune system?

Well, it's worth getting tested for, but I'm wondering if I'd need a spinal tap to check for bacteria in my central nervous system? That sounds very expensive, and I might not be able to afford it right now.

If somebody had damage to their nervous system like that, but the disease had stopped, would the fibs, fascis, denervation continue to show up in an EMG? I mean the nervous system won't fix itself, right? But I'm wondering if the signs I have now mean that I am currently deteriorating, or that those signs would still be there after the damage had stopped? I'll ask the next neuro these things.

If I have a MRSA infection in remission, I don't know that I'd want to risk going under the massive antibiotic treatments they are using right now for MRSA, that aren't even very effective, can cause organ damage, and weaken the immune system to other infections. From what I understand MRSA often takes hold after people take antibiotics for something else, and their protective bacterias are destroyed. I could wait for the cockroach brains to hit the market.

Well, I know a couple of guys studying biology here, I'll ask them to help me look for someone who can analyze this, and I can ask the neuro in a few days too.

---I haven't found a way to get upside down in years though. I bought some gravity boots a couple years ago, but my right hand isn't strong enough to hold my weight and get me upside down. I'm trying to find someplace that has inversion tables.
Hangups are the original inversion tables.$299 online You don't have Sam's club but they are $150 generic.I've had mine years and the guy that set it up for me had a bad spinal cord injury and was unable to walk, but he was the picture of health and walking fine when he set mine up.I rarely use it,but I know it helps everything when I do

I have a friend that has a masters in Physiology.Since that was my favorite subject,I tend to hang on her words.She believes if you have good posture,no structural abnormalities, perfect allignment,you will live your life without chronic illness and die of old age.Hanging upside down can't help the structural abnormalities too much, but for improving posture and vascular benefits it's great.

Please understand this is all personal THEORY.
My theory is you have neck problems from the wrestling.That was initially separate from the onset of the MRSA.You said you had been wrestling the times around the initial
presentation of the boils.Did you have bruises?MRSA loves bruises.My theory is that you have had MRSA 7 years at least. We all have staph in our bodies so it would not necessarily cause a fever at onset.That depends on your immunity(which depends on your overall health and age).You were what 23?Your immune system, unless you were taking a lot of steroids,antibiotics, had cancer or Hiv or HepABCDEFG(is that all inclusive)or were somehow immunocompromised has been fighting against this infection for 7 years.It can invade any organ or system in the body.You are still young.There was a recent news report of it entering an elderly man's spine that did not survive.It was probably his time.This is in no way your time.Our decisions are our worries.I'm sorry I feel like I gave you more, but my theory is that if you could get rid of the MRSA, the other problems might resolve themselves.My theory is that MRSA is manageable, but yours is out of control, no longer in that category.

When I was your age, I had to make a similar decision.Did I want massive amounts of cardiotoxic ,nephrotoxic ,neurotoxic chemicals poured into my body for 6 months or did I want to die of cancer.(or maybe not)Actually, I was a little older,not as able to handle the poison.I still chose life(I hoped for that outcome).That was 18 years ago.Was it worth it?If I didn't think I had MND now I would say yes.If I thought I could do something to remain ambulatory I would say yes.If I thought I could help you, I would say yes.I will help you in any way I am able as I'm sure all the other forum members will.

I still have hope for you.

Now, if Wright comes back and says he believes you have MND and there's nothing odd about this situation, I will say, don't fight because that would only make things worse.If you tell your neuros you know some nutso on the forum that thinks this could all be MRSA and neck related and they say,that's impossible and give you realistic reasons why it's impossible,I'll give up my hope.I'm hoping to hold onto it.I believe in possibility.
I forgot to add that my theory about your hand is that that is MRSA and I believe it to be FACTOID.I've seen it before.It is common.
I am interested in this MRSA. What I meant is that since I haven't seen a progression in all these years, even if there is MRSA inside of my central nervous system, it doesn't seem to be hurting me anymore. I'd certainly like to find out anyway. I hope it doesn't require a spinal tap, because that sounds very expensive.

Also, I think that the few antibiotic treatments that have some limited success don't work at all on central nervous system infections.

I've noticed so much twitching since the EMG, around my elbows all the time, in my back and face, that it's been scary, but I think it's just the anxiety exaggerating what I already had; that would be a wild coincidence if I started to fall apart right now. But I was also worried that I had been just ignoring these things. Then I was dicing an onion tonight - with my right hand - and I remembered that years ago I started dicing vegetables with my left hand, because my right was so weak. And I thought, if I can still dice an onion with my right hand, even though it became awkward years ago, then how can I be progressing?

There is something called Hirayama's, that only affects males 16-25, and only in the arms, and it only last 2-5, after which there is no recovery, but no progression either. It's most common in Japan and Guam, but can occur anywhere. If that were the case, I would actually be done. The thing that has worried me though is that they claim I have fibrillations in my leg. And I don't know what the EMG readings would be in a person with Hirayama after the progression has stopped, would they still have the fibs, fascis, denervations, nerve conduction blocks that I have?

About the hang-ups, I ordered some hangups a few years ago, Teeter Hangups, (I call them gravity boots) but because of my weak right hand I couldn't hang onto a bar long enough to swing myself upside down and hook the boots. Unless you are talking about something else? These were devices that brace to the ankles and have hooks for a pull-up bar.
How do you know the MRSA isn't causing the fibs?I would think Wright can explain the other questions.(answers)MRSA is destructive.Maybe even mine.

I have the boots too.I like to be spotted now though.

And if you can get a mylegram/cat of your cervical spine area(not sure if it exists,but would think)that would be very enlightening.

You seem less stressed now, I guess you feel safer now?
Please have your spine checked carefully. Where, yes, Jim had a broken back at L5-S1...the culprit that caused almost all of his problems...including paralysis, spasticity, and dirty emgs in multiple areas of is body was a herniated disc in his thoracic spine (T6-T7) that was dismissed as "not remarkable".

It took us fighting for more in depth tests...close up, more powerful MRI's specific to the level of the herniation as well as a CT scan that showed a different perspective. The herniation that was dismissed as not remarkable was actually fully calcified and compressing his spinal cord by approx 1/3 for (from what we can gather) 2 1/2 years. A less compressive injury may cause a slower progression of symptoms...but a progression none-the-less.

If you have herniations or any other kind of spinal compromise...don't settle for the MND diagnosis...investigate your spinal injuries completely first!

As tricky as some of these spinal surgeries are...I'm hoping this is what you're dealing with instead of MND.

Tracy- thanks for responding. Why did you have to fight for more tests, is that a matter of getting it paid for by insurance? I don't have insurance, but I will have to fight with with my bank account.

Charlotte - Are you saying you think you could have an MRSA infection in your nervous system too? Are you looking into getting that tested?
I have been less stressed for the last couple days. I've been telling myself that whatever is wrong is progressing slowly, if at all, so I should have some good years left at least. But I also don't know if the speed of progression can accelerate rapidly. From something I read about a subgroup of ALS called flail-arm, it sounds like that may be the case. The average life expectancy is 57 months, so I'm well beyond that and not close to dying. But they say one arm can progress slowly for several years and then start getting severe and spreading. Can it progress this slowly? and for this long? I don't know. But it's scary because now I wonder if I could suddenly start progressing much faster.
Do you have any upper motor neuron symptoms?
No, I wrote that poorly.I was referring to that maybe Wright could answer my questions about the fibs.

I am blown away by the thoracic spine story.Exactly what type of MRI/cat showed the true story?

Marcus, it is imperative you get your clinical exam reports so you know if you have UMN signs.How soon can you get that?Regard's the physical part, reflexes, observations made by the Docs.You should be able to pick up a copy now.

Charlotte Again, How old are you exactly?(I know I'm just plain rude)
We had to fight for more testing...because once that ALS diagnosis is put out there...we found that no one wanted to touch Jim regarding spinal cord was deemed as unnecessary (which is just cruel IMHO)

I'm sorry you don't have insurance...but from reading your story about how many problems were seen in your spine on images...I don't know how concerned I'd be with MND. It's been thrown out it's possible..but I'd think that spinal issues are just as IF NOT MORE possible to be the culprit. Jim's herniation did not show signal change in his spinal cord until we were able to get to a 3 tesla MRI machine to look exclusively and closely at that herniation...then the CT scan showed the calcification of the hernation as well as how far into the canal it actually went...before that...all radiologist notes stated that the herniation was there, but was unremarkable.

Jim's injury if not corrected would have continued to progess to the point that it would have also taken his bowel, bladder, and sexual functions as presented VERY closely to a MND. We kept fighting because there was no nerve denervation showing above the level of his injury (mid-chest) even though widespread faciculations were present in his arms.

Also..please note that we had UMN and LMN signs..and denervation on the EMG in more than one region that they tested...but EVERYTHING remained below the level of the injury.

If there is an injury that could also be causing symptoms...that should be explored completely and should keep a definitive diagnosis of MND from being made until that is addressed.

Marcus is not really showing a lot of progression, and is running up and down flights of stairs.His problems are cervical spine related.His case presentation is extremely odd. There is no way he has a broken back, but I understand your views on all patients diagnosed with MND and spinal symptoms great need to be insistent on addressing spinal tests thoroughly.
Charlotte...that's what I'm saying...I think it's HIGHLY likely that it's spinal injury related.

As I said previously..While Jim had broken L5-S1 and had that fixed 6 months prior to his ALS diagnosis....that WAS NOT what our issue was a simple (HA..simple....) herniated disc at T6-T7 that was listed as unremarkable by the radiologist and thus ignored by 5 different doctors.

They noted that BuenosAires has severe issues with his spine...but because a radiologist listed them as unremarkable...they are not looking more closely and are "labeling" him as MND.


DO NOT accept this diagnosis unless there are NO OTHER REASONS for the issues that you are experiencing...and we are living proof that spinal injuries can present like MND.

That does not mean that you can't have this case...the spine needs to be addressed COMPLETELY and CLOSELY and IN DEPTH before accepting this diagnosis. It could save limb function and bodily functions down the line if this is the issue. I don't want to see this gentleman end up as a quad if he's had a misdiagnosis.
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You make avery important point in mentioning making sure your scan is a 3tesla scanner. It is just many times more accurate. I had had a cervical fusion about a year after the first very subtle symptoms that something was not quite right. The fusion was for a horse accident I had.
Before my Doctor gave me the ? PLS ?UMN dominant MND Dx (if you can call it that) he made sure that I went to a # tesla scanner rather than the 2 tesla scanner, just to make sure that my neck fusion was not causing the issues.

This discission has made me wonder wheter something in my neck is still hiding. Food for thought. I am progressing slowly, so I suppose that rules the neck idea out (pity)

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