Posts by James Rodriguez7

Before I get into the details about my testing in San Francisco, I gotta touch on those DNA results and that whole CCTT thing from back in July 2012.

It says this: "DNA shows a homozygous deletion of the SMN2 gene. Other requested lab findings are within physiological limits. CCTT shows anisotropy with hypothermia in the right hand and fingers in the C6-C7 dermatom.

A homozygous SMN2 deletion predisposes one to lower motor neuron syndrome and is found in 5-9% of control subjects. Asymmetric anisotropy in the right hand indicates involvement of autonomic fibers."

Alright, enough about that. Let's talk about the San Francisco tests.
The big goal here? Ruling out any kind of motor neuron disease.
They ran the works: blood work, EKG, EMG, ultrasound of the right axilla, chest X-rays, and an MRI of my cervical spine.
Long story short: motor neuron disease is off the table.

I'll focus mostly on the EMG and the MRI (the latter looks fine).
The EMG shows a moderate, chronic lesion in the upper trunk of the right brachial plexus. It also shows some mild, distal polyneuropathy in my legs. (I haven't mentioned my legs in this thread before because they don't really bother me. Back in April last year, at Mayo Clinic, they flagged some minor nerve fiber damage in my feet).

The cervical spine MRI (T1, T2, and STIR in sagittal; T1 and T2 in transverse) shows the cervical vertebral bodies have normal height, position, and signal intensity. The dorsal intercorporeal line and lordosis are maintained. The intervertebral disc at the C7-Th1 segment has normal height but shows altered signal intensity due to degenerative changes.
In both sagittal and transverse views, there's a small disc bulge at the C6-C7 segment, which slightly narrows the anterior epidural space. The lateral recesses are clear, the right neural foramen is narrowed, and the left one is normal. No signs of herniated discs anywhere in the cervical spine.
In the sagittal view, at the Th4-Th5 level, there’s a small subligamentous disc protrusion positioned right-preforaminally, narrowing the anterior epidural space and causing slight compression on the spinal cord. The spinal canal width is normal. Across all cervical segments, the right neural foramen is tight while the left stays open. The spinal cord itself looks normal in shape and signal. The craniocervical junction looks fine too.

Final verdict: go exercise.

I'm currently stuck doing some extra testing out in San Francisco, so once I wrap this up and get the results back, I'll let you guys know if anything actually changed.

Since my whole medical history is sitting with the doctor I’m seeing for these tests, I've no clue if they even bothered to note anything about spinal muscular atrophy. I saw the term pop up before, so it was probably tucked away in my diagnosis somewhere.
Anyway, the DNA analysis has already been reviewed over at Rib.

velvetmoose9 said:Nah, if you ask me, nobody's actually nailed down the exact cause of isolated motor damage when the sensory stuff stays totally fine. It’s still anyone's guess.

Exactly.

velvetmoose9 Asks:
So, honestly, this whole mess probably goes way further back than 2010. Just my gut feeling, you know? Anyway, how've you been? Still, better before. So, you’ve noticed your muscle mass is clearly tanking and that arm feels weak as hell?

Exactly. Honestly, I didn't even pay attention back then. Before 2010, I was taking dance classes, and that’s when I’d start noticing my arm felt weak in certain spots. Like, say, when I’m holding my partner with my upper arm extended forward and my forearm against her back, hand tucked between her shoulder blades—you know, that classic waltz position. I’d get this dull ache only during those specific moves. I just figured I had weak arms or whatever. Those moments were way too brief to actually think anything of it, and I never noticed anything like it outside of the studio. That was back around 2007 or 2008.

velvetmoose9 said:Missed that. Did anyone actually suggest I get a muscle biopsy?

I didn't do that. I think someone mentioned it as an option, but honestly, I can't even remember who. Anyway, no doctor ever pointed me toward that.

velvetmoose9 said:The tests came back clean, which is a relief, but I’m guessing they probably ran some serology for potential infectious triggers too—anyone know exactly what went down in the lab?

Look, I’m a total layman when it comes to medical jargon, so this whole serology thing is flying way over my head. I looked it up, and all I see is stuff about antigens and antibodies, which honestly tells me absolutely nothing useful. What am I even supposed to be looking for on these reports? Like, which department, which clinical unit, what exactly is being analyzed? I’ll give you two examples of what I'm dealing with: first, one test shows that my entire right arm is noticeably colder than my healthy left one. Second, there's a molecular genetic test for Spinal Muscular Atrophy (SMA). Right now, I've got two ways of reading this: 1) through DNA analysis, they found deletions in exons 7 and 8 of the SMN2 gene.
So, we ran the DNA analysis, and here’s the deal: they found two copies each of exons 7 and 8 of the SMN1 gene, zero copies of exons 7 and 8 of the SMN2 gene, and two copies of the NAIP gene.

velvetmoose9 said:That’s exactly why (and maybe I’m being way too extra about it) I keep harping on about those potential compressive moments from a few years back...

The only thing I can laugh at is that whole ridiculous dance. Even if there actually was something else to find, who even cares? What good would that info do anyone?

velvetmoose9 said:Look, after doing my homework and mapping out this whole "bio-regenerative" therapy thing, I’ve decided I'm not just diving in headfirst. I think I’ll go hunt down a second opinion from the specialists over at Rib.

The crew over at Rib doesn't buy into this kind of therapy, so I'm reaching out to my doctor directly. Honestly? He claims it’s mostly just a massive money grab rather than an actual cure. At least, that was his take in my case. That's the main reason I haven't pulled the trigger on starting it yet. Actually, that's pretty much why I even started this whole thread.

velvetmoose9 said:Decortin He probably should. Look, I’m all for cutting down inflammation, but honestly? It’s a total guessing game right now. There isn't even a clear roadmap on what dose to start with or how we’re supposed to tweak the therapy as we go. Plus, based on what’s been shared, there's zero proof that they've actually confirmed an inflammatory process. We’re flying blind here—there isn't even any data on elevated sedimentation, CRP, CPK, or LDH to serve as basic red flags, let alone any more specific markers. Total mystery.

Here’s the game plan for the meds: start with 20 mg for the first week, then drop to 15 mg in week two, hit 10 mg for week three, and finish off with 5 mg for the last stretch. Just make sure you take them after you eat.
Based on all the data I’m looking at, the only thing that actually looks even slightly off is this: my alpha-2 and beta globulin levels from the serum protein electrophoresis are just a tiny bit lower than average. Like, we're talking barely noticeable.

Some private doctor down in Miami just mentioned nerve inflammation as the reason for the pill regimen. I didn't even bother asking follow-up questions. Honestly, I don't ask much—I just do what I'm told and move on.
Unless we're talking about heavy-hitting stuff where the price tag actually matters and things get serious.

Thanks again for wasting your time on me. Honestly, I just need some real advice here. The only thing that actually makes sense—and it’s what everyone keeps preaching at me anyway—is that I need to keep up with my exercise and not let myself go. On the flip side, it would be killer if I could actually talk to someone who’s been through one of those biological therapies. You know, someone with a case similar to mine. I see people using this stuff for things like dental work, but that doesn't really help me much.

Thanks for looking out.
First off, let me clear the air on those last few questions: I haven’t had any major impacts or serious injuries that I could actually track, and my arm hasn't been bothering me for any extended stretches. I grew up in a small town, so I’d occasionally haul wood around to keep the house warm in the winter, or handle some light chores like digging or patching up walls. Nothing heavy-duty or long-term, though. Lately, I've been stuck behind a desk in Washington, D.C. for school, which has basically just meant sitting around instead of being active—definitely not the other way around.
I sleep exactly the same way every single night—same as I did before all this mess started—so yeah, let's just say sleep isn't even on the table for me. My wrist feels solid, though.

Search:
So, some neurologist over at Washington, D.C. General tells me I’ve got an axillary nerve lesion and my deltoid is wasting away. Total buzzkill. She’s sending me off for an EMNG and an MRI of my neck, plus a bunch of other tests that I’m just gonna skip because they all came back totally fine anyway. There were even more follow-up tests later on—also normal, so yeah, ignoring those too since they don't actually matter to this whole mess. Current plan? Just popping Neurobion tablets and hoping for the best.
December 2010.

So, I just got my EMG results back. It’s a mess. Basically, there’s a moderate subacute neurogenic lesion at C5 on the right side, plus some chronic damage at C6 on the right. To top it off, there's also a mild chronic neurogenic lesion at C6 on the left. Just my luck, right?
The EMG is showing some mild subacute axonotmesis in the right axillary nerve. Just my luck.

So, I just got my MRI results back for my neck. It shows a reduced physiological lordosis—basically, my spine isn't curving quite the way it should. The vertebral bodies look normal enough in terms of height and shape, but things are starting to go downhill at the C5-C6 and C6-C7 levels. Early degenerative changes in those discs. On the bright side, the lateral recesses and neural foramina are clear, and the dural sac and spinal cord look fine with normal signal intensity. Even the craniocervical junction seems okay. Just another day in this aging body, I guess.

Both results came back from the trauma center over at Draskovic.

Just got back from my follow-up with the neurologist. The verdict? I need an MRI of the upper trunk of my right brachial plexus (specifically looking at that axillary nerve) plus a visit to a physiatrist. Great. Just what I needed on my schedule.

Physiatry update: physical therapy today involved galvanic stimulation on my neck and right hand, plus electrical stimulation on my right axillary nerve. I’ve been grinding through this combo of minor adjustments and targeted muscle exercises from February all the way through December 2011—doing all this work between Washington, D.C. and San Diego. Back before summer 2011, the same doctor recommended I see a neurosurgeon about my Rib. The surgeon ruled out surgery based on my current results, though more tests are coming; I'll post those when I have them. (Later on, I even tracked down two other neurosurgeons in Miami because of various recommendations, but the verdict was always the same.)

So, I just got my MRI results back from Diagnostics 2000. Honestly? Not too bad, all things considered. The cervical spine looks solid—bone structure is fine and the spinal canal has plenty of room to breathe. My spinal cord is looking totally normal, too. They also did a scan on my brachial plexus just to be safe. It showed some minor signal changes along the right side of the C5 and C6 trunks, but nothing scary like a tumor or anything actually crushing the nerves. They checked out the quadrilateral space near my right shoulder as well. Good news there: the lower labrum is perfectly fine, and there’s zero issues with the ligaments or the bone. The only real bummer is that my deltoid muscle has lost some volume and is showing a little bit of fatty infiltration. Just one more thing to deal with, I guess.
Bottom line: The MRI is raising some red flags. It’s showing subtle signs of plexitis on the right side around the C5 and C6 levels. Everything else looks fine—no issues found near the posterior axillary nerve or the posterior circumflex humeral artery. Still, the doctor wants me to get a neuromuscular workup just to be safe.

Back at the neurologist's office in D.C. again. She’s telling me I need to go get checked out at a specialized neuromuscular clinic over at Mayo Clinic. Great. Just what I needed.

So, I saw a neurologist over at Miami, and here’s the breakdown from the report: my right deltoid is looking pretty wasted—serious atrophy there. The muscles around my shoulder blade, my biceps, and even my brachioradialis are also showing some thinning, though it's a bit milder. I've got zero strength when I try to lift my right arm out to the side or bend my forearm. To make things worse, the doctor couldn't even trigger my right bicep or brachioradialis reflexes. On the bright side, no sensory loss, no Horner's syndrome, and no muscle twitching visible. Still, not exactly the news I wanted.
So, here’s the breakdown: I’ve got some seriously nasty peripheral nerve damage hitting my right deltoid. It's pretty rough. My right biceps and brachioradialis are also taking a hit with moderate nerve issues, though luckily my body is doing a decent job of compensating for it. Things are looking a little less dire in my triceps, my finger extensors, my right hand muscles, and my infraspinatus—just mild stuff there. Everything else on the neurography looks totally normal, except for a low M-potential in my right axillary nerve. Just my luck, right?
The results point toward proximal damage: C5 and C6 nerve roots are messed up, plus some slight C7 and C8 issues on the right side. It could be a brachial plexus injury or something involving the radiculospinal area. Weirdly enough, I haven't lost any sensation.
Physical therapy.
April 2011.

8. Another MRI: same deal as before + bulging discs at TH3-TH4 and TH4-TH5, one of which is pressing against the spinal cord, which is shifted more to the left in the canal. Also a TH7-TH8 disc protrusion that’s paracentral and foraminal on the left side. Doesn't look like there's anything clearly pathological happening where the brachial plexus roots exit.

9. Neurologist in San Diego: nothing new.

10. Neurological checkup at Mayo Clinic. Same as six months ago. They still can't nail down the cause or the exact spot of the damage; since they ruled out spinal and some radicular stuff, they're thinking the motor fiber damage might be further down at the level of the brachial plexus.

11. Second neurologist at Mayo Clinic (sent by a neurosurgeon): same findings as before + currently no solid clinical or EMNG signs of generalized motor neuron disease. They're considering neuralgic amyotrophy or juvenile monomelic amyotrophy. Physical therapy.
Late 2011.

12. Follow-up with the same doc: neuro exam is the same so far + no muscle atrophy in my legs. Reflexes and sensation are a bit low, no nystagmus, coordination is fine.
Conclusion: heavy chronic lesion in the C5 and C6 radicular distribution on the right; milder chronic neural lesions in other arm muscles. Conduction speeds and distal latencies are normal, though the M potential in the right deltoid shows a harder reduction in amplitude. Sensory neurography looks okay.
April 2012.

13. Private neurologist in Miami, conclusion: there's a severe neural lesion in the right shoulder muscles and the right biceps. A significant lesion is also noted in the second group of muscles. Neurography for the ulnar and median nerves shows normal parameters—nothing wrong with the nerves in the forearms or hands. Sensory neurography is borderline, suggesting plexus damage.
Right axillary and suprascapular nerves show normal neurography.
EMNG results match the clinical picture:
- Moderate-to-severe (level 3 out of 6) compressive radiculopathy of the C5 and C6 roots on the right (up to 40% axon loss)—specifically for the right C5 root, there are signs of active neural destruction, meaning acute degenerative changes.
- Also showing signs of a lesion closer to the upper trunk of the brachial plexus.
The cause and location seem to be a radicular lesion combined with damage to motor fibers further down at the brachial plexus level.
I'm recommending biological-regenerative therapy + Decortin tablets.
May 2013.

They didn't specify what kind of "biological therapy" this is. I went to see the doctor who referred me, and he says they first take a blood sample to send to Washington, D.C., and then once the lab processes it, the therapy starts. He's super optimistic and thinks this might actually fix the problem.

End of report. I'm exhausted.
February 27, 2013, 3:47 AM

God,

So, what’s the verdict here? I’m dealing with some serious atrophy in my right deltoid.
It all started back around the summer of 2010. First, I noticed the muscle mass just vanishing, and then the strength in that arm followed suit. My range of motion is pretty much the same as my healthy left arm, but the real kicker is the loss of power—I feel it the second I try to lift anything even slightly heavy. I’ve already burned through five or six neurologists, had about the same number of EMNGs, and sat through three different MRIs. Last year, my right biceps started giving out on me too. Up until recently, the standard advice was basically just "go do some physical therapy." But after seeing a specialist down in Miami, he suggested looking into bio-regenerative therapy since I haven't seen any actual progress in two and a half years.

Anyone else dealt with something similar, especially regarding bio-therapy?
Any thoughts or advice would be huge.