I'm at the end of my rope

[JamesMcM]

What can cause the symptoms of an ascending syrinx (increasing and some ascending neuro pain, function change <in large part due to the worsening pain in my shoulder blade area, along with the sticking and popping shoulder blades, which makes moving my arms ever more difficult>) without being an ascending syrinx? Bad luck, like all the central pain I wound up with? I get an MRI every year, and they show nothing ascending from year to year, as well as compared to older scans. Increasing pains make my concentration worse (on everything except pains), and just make life miserable. It's bad enough I don't know ADLs, but even if I did, I'd be losing the ability to do them.

Honestly man they just don't know the full extent of chronic paralysis and aging, that's just a fact. So what your experiencing could just simply be out of modern medicines capabilities to diagnose and or more importantly help. I know the feeling! And we are far from alone, they don't even know the full implications of having autonomic Dysreflexia even when very sporadic don't know the long-term implications. I know of a young quadriplegic, I think he's been injured for A little over five years he's been having nonstop seizures, turns out to be 100% caused by the injury in fact caused by autonomic dysreflexia sending his blood pressure so high, they can't do anything for him so he's just a ward.

My physiatry us tried to encapsulate this with a diagnosis when I went to him over the years with all of these horrible symptoms that could not be diagnosed things from uncontrollable random sweating to undiagnosable autonomic dysreflexia nonstop etc. he literally called it "progression of injury". Tried to explain it with something about sympathetic nerves, but the overall premise was they just don't know exactly yet. People have not been surviving sci for that long, so a lot of us are going to be guinea pigs for new implications/ complications that we never realized.

by the way, my right shoulder has always been very painful, I experienced many different types of pain with it , It can get bad enough to keep me up at night. Now I do have tendinosis at this point, but the pain was there even before that and honestly I think it is just from the fact that it has far less function compared to my left I can't pronate my right arm and or move it to certain positions and angles when I try or do by accident it's clearly very unnatural and painful, and also many muscles that are important for stabilizing the shoulder are paralyzed, especially near my right armpit area. So after trying to figure this out for four years, and I think the shoulder is just in a unnatural position all the time and certain movements caused a lot of damage because they're not properly stabilized etc. therefore it aches all the time, yes a lot of times it even feels like nerve but maybe it is nerve pain and some of the chronic bad positioning. That's just my theory, and actually my doctor says that it could very well be viable, nothing fancy in terms of neurologic disorder just the fact of the injury not holding the shoulder naturally and putting it in a bad position all the time.

[alan]

I'm on Lyrica 150 mg three times daily, and have been for I don't know how long. Never had any effect on pains, but neurologist has kept me on it in case it is preventing seizures (had a seizure in spring of 2009, and three more between then and October, 2011. Cause unknown.) Have tried with it amitriptyline, nortriptyline, Cymbalta (couldn't take it due to side effects), and other things I can't remember right now. No help. Worse, I can feel, better not, apparently. Latest pain doc wants to try Nucynta if neurologist is okay with it. Opiates have never done me any good, but he says it works differently.

I can't convince anyone to inject WD-40 around my shoulder blades to stop them from sticking. Seems like a good idea to me. Or a handyman could nail them down. Or I can go back in time, insult Marie Antoinette, and meet the guillotine.

[alan]

Just an update. The worsening continues, still no answer found. The upper half of my back is killing me, with one of the sensations being the feeling of being stuck to a giant sticky trap, which holds my arms back (the rest of my body is keeping up, of course.) I can barely type at all now, and that was about the only thing I could do. Same MRI results-the two little syrinxes are not growing, the ongoing scar tissue formation filled in the area between them, it looks like a disaster area, etc. etc. (the last reading was mine, not the doctors.) I want to be able to exercise.

We did do a brain MRI this time, but it wasn't really to look for anything. Over the years, talking with my mental health therapist, we had talked about how chronic pain shrink the brain, stress shrinks the brain, and aging does, so I jokingly would say that my brain must be the size of a walnut by now. I told my neurologist, who laughed and said it was probably time for a baseline scan, anyway. My brain was not the size of a walnut. It actually filled my skull quite nicely. It was my frontal lobes that were shrunken. That's possibly the result of a bad concussion I had back in 1971.

I did have a couple of seizures last year year. Still no particular cause found. Still taking Lyrica.