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Epilogue - Part III - The Neuro and a Glimpse at a Diagnosis

PostPosted: December 10th, 2005, 12:13 am
by puggriffey
One of the most desperate things about the thoroughness of the workup at Mayo was the order for which the consults and tests had to come. Why? Because DEEP into the whole itinerary was the neuro consult. Of course, when you are like I was, you desperately want to get into that neurology department, and get your death sentence. It's this weird push pull that goes on constantly - 24/7. You ALL know of which I speak, because I suspect most all of us (even Basso?) are caught still in this perpetual fear the worst constantly and yet crave the best periodically cycle we are in (the one that has us rushing here or to doctors or to wherever for reassurance). So here I am constantly evaluating myself, desperate for the neuro exam to come, yet convinced I will at that point finally know that I am ill, very ill, as the symptoms and physical anguish are now too strong, too scary, and too REAL to be anything else. I spend night after night thoroughly researching AGAIN all the diseases (options, I was calling them) that could fit my symptom patterns. And as you all know, they are few, and none too "good". But at this point, anything is better than ***, so I sift deeply through MS symptoms, fibromyalgia, polymyalgia rheumatica, myositis, MG, Parkinson's, multiple system atrophy, hypo/hyper-thyroidism, ME (post viral syndrome), muscular dystrophies, etc. My swallowing is now suspect, and I feel things are starting to regurgitate through my nose when I swallow. This is SCARY, and now I feel the tongue twitches too. From that day, my mouth hasn't felt right, and still doesn't today.

The neuro visit was an agonizing 5 days into this process. And mind you, there is no EMG scheduled, just a consult - that could be another 1-3 days out, if I am lucky.

I do blood work and urine one day. An EKG and ECG the next. Each day you are desperate to find out what they see/know. I gradually find out things - my heart is very good - strong, well shaped, and nice spacing (whatever that means - you take every bit of "good" you can find). My labs confim no diabetes. My urine confirms low testosterone (maybe that's something? I rush off to the library to research). I have NO mitral valve prolapse - I am told by the cardiologist that it was "in vogue" to diagnose this in the 70's and 80's, and with new technology, they now know that these diagnoses were just plain wrong in approximately 50% of cases. So what, I think, that ISN'T my problem.

Finally, I wait one full afternoon in the neurology department on stand by, hoping for cancellations that wouldn't come. What did come though was a pushed up appointment to tomorrow, one day earlier than scheduled. And my doctor now is a neuromuscular dfisease specialist who heads the ALS clinic at Mayo. How fitting I think - now I'm scr$wed. But that weird "thank God its sooner, even though I'm [email protected] tomorrow" feeling is bac. I am now on my final night, and thinking of what my last meal will be. I don't eat, but I sure as heck enjoy putting my son to bed, and I watch three old episodes of the Mary Tyler Moore show. Somehow, I again feel OK, and at peace.

The neuro visit comes. I arrive two hours early, and WAIT. During that time, the family next to me is convening to review what mom's diagnosis is. I can't miss overhearing - they seem unconcerned with those around. Mom is trying to speak but can't. She is young, attractive, scared. She cannot enunciate words. Her speech is slow. I get chills. She confirms that the speech pathologist has declared her tongue abnormal, and her speech pathology "poor".She HAS the slurred speech and tongue problems I have feared for years now. And there is NO mistaking it - she is remarkably calm though. They are putting her into the therapy program, and a reasearch program too. Remarkable - her focus is on what comes next - NOT what the diagnosis is. Honestly, I'm not sure they even know. Next to me, a Parkinsons' patient waits his appointment. I don't know this for sure, but I am nowe getting my first, firsthand look at a pill rolling tremor (unmistakeable) and occasional "wing flap" tremors. Now all I had read on Parkinsons came flashing back, and t5his guy is the living incarnate of what I feared I had once. But I was NEVER like this - this was unmistakeable. Behind me, a girl complains of chronic headaches. Migraines. She has vomitted three times today. All of this make Mayo sound like a morgue - it is not...these are three of hundreds of patients, and the only three remarkable stories I heard first hand. I see about 20-30% of all patients in wheelchairs. Only 2 all day are as young as me - most are 50 or older I'd guess.

My visit with the neuro finally camne and was as thorough as all others. He gathered a full, complete history from me, including las6t year - all neuro visits, and reviewed test results to date. CK is normal, and he likes that. Internal medicine's neuro workup is unremarkable, and he likes that. My sed rate is good, and he likes that. He then does a 40 minute (or so) physical exam.

Reflexes are normal. Gait is normal. Balance good. Flexibility good. He checks toe to heel walk. Fine. Strength testing is good. NO - I remind him - I can do anything for an instant, but if you ask me to resist force for 10 seconds, I will shake like a leaf. I told him to watch me do a half sit up. I do, and my whole body violently shakes after holding it for 2-3 seconds. He calls this unimpressive. He is not placating me.

He does resistence testing on my head. Tilt forward. Backward. Side to side. Eye testing - follow the light, look up and hold for 20 seconds then look at me, look down and hold then look at me etc. I recognize many of these - the latter are for signs of MG, the first for MS.

Honestly, the neuro exam at Mayo was not much different from the exam at my other neuros - a little more thorough maybe, but not much. This fascinates me - this is the mecca of medical science, and a specialist in ***. All this while I had always had my doubts about how meaningful those neuro exams could be - was my neuro not very good? Was he rushed, or not being thorough because he had a predisposition about me not having a bad disease? Obviously not.

At the end of the evaluation, I got my first debrief. He strongly suspected I do NOT have ***, or any other neuromuscular disease. He could not rule out anything 100%, and was wanting to do an EMG at Mayo because he knew that the tests there would absolutely be reliable for him, but he called it "at most precautionary, and certainly not necessary to form a basis of opinion" I was literally stunned this time. These weeks of near death feeling. The dramatic symptoms - so REAL and scary - were now being virtually ruled out. I probed him further - I was not walking away this easy. We discussed motor neuron disease at length. Here are some highlights (you WILL recognize many):

*** is not vague, and does NOT present in an ambiguous way. Why, then, is it so "hard to diagnose" sometimes? Because the process of ruling out other more treatable cxonditions with close, if not identical overlaps in symptoms and features takes significant time. It ultimately becomes a diagnosis of exclusion, and by this time, the disease advances to a point where it is unmistakeable.

Twitching for noths without weakness is a relaible pattern that points strongly to a benign condition. In my case, the weakness may be one of many components of the same genetic predisposition for nerve channels and muscle fibers to react hyperactively to stimuli, most of which are believed to be viral and/or stress related. In my case, I could probably expect more of these "episodes" over time, with varying degrees of severity. Perceived weakness, along with tremor, spasm, cramp, or any other condition impacted by nerve challes and muscle fibers could fall into theis condition. Do they know much more about a cause, or a specific organic driver for who gets this versus who doesn't? No? But he confirmed markedly that plenty has been done at Mayo and other places that confirms that this condition does NOT progress to disability and/or neuromuscular disease, and that the course is benign. He confirmed that for every published Mayo study, there is underlying, constant information sharing that is not publicly published that builds a strong basis for these conclusions. It would be "medically unacceptable" he said, to base a benign condition of this nature on anything less than years of compiled research, data and anecdotal information from hundreds upon hundreds of patients.

I waited a long 30 hours for my EMG. And I felt like c*r*a*p that day - tired, weak, achy, twitchy. I was not happy to go in there in this state, but felt I would know for sure if I felt this way if something was going on. For me, Hail Marys, prayers to St. Jude, and a lot of selfd testing helped me through the wait. And so I was called. The EMG room is like a mini operating room - NOTHING likje what I had experienced in the other two neuros. They had me change and lie on the table and wait, for what seemed like an eternity. I've never felt so small, and so naked, in my entire life. And I regretted each of the wasted 17 months previous of worry, fear, depression, etc. (although obviously, I spent some of that time happy and productive, it felt like a complete waste). If only I had known then what I know now - it was so much less ominous then - I had NOTHING to worry about...I wasn't completely alone though - during those last months, I had formed a much tighter relationship with God, and I felt that my guardian angel was in that room with me. I know many of you don't believe in the religion hooey - I can't and won't try to compel you to think otherwise, except to say that I have felt so closely guarded by God, and by my faith over this time, and I know now that this is not the Kingdom of God, and that what awaits us all in the next world is so much more vast, and potential incredible, than anything we could know in this life. I have always felt that there is a purgatory and a judgment, and that this life we are living now is it. Think about it. Wouldn't it be incredible if this whole conept of judgment, purgatory and our meaning in this life is really what this world is all about? In times like these, you really begin to understand what a true commitment to faith, and God, really means and what it means for your life in this world and the next.

My EMG was performed - first the nerve study, by two technicans who were VERY good, and thorough. This was NOT like my prior NCS's - this was all over, many more shocks, and included a repetitive shock exam on my shoulders and face which I believe was used to measure for mG and other spinal atrophies involving the facial and cervical nerve roots (at least something like that). Then, the neuro I had seen came in and performed the needle exam. Left arm - 5 pokes. Left leg - 4 pokes. Back - 2 pokes. Shoulder/neck - 2 pokes. Careful, prodding pokes, but NOT multiple places in a muscle, or 70 pokes. Very deliberate, and i could see/hear everything on a large monitor in front of me/us. 52 minutes. The most important 52 minutes of my life....

And I quote from the report:

"Prior to starting the procedure, the patient's identity was verified, all available records were reviewed, the nature of the procedure was explained, the appropriate sites of the exam were confirmed directly with the patient and technical staff, ad a pre-procedure pause was performed for final verification of all of the above.

The nerve conduction studies, including repetitive stimulation of the spinal accesory and facial motor nerves, and the needle exam are normal. No exceptional activity noted.

INTERPRETATION: The study, in total, is normal. There is, therefore, no evidence of a generalized neuropathy, myopathy or defect of neuromuscular transmission. EJ Sorenson"

The wrap-up and my good bye to you all in the final chapter to follow...

JG