Epilogue - Part II - The History and Getting Started at Mayo

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Epilogue - Part II - The History and Getting Started at Mayo

Postby puggriffey on December 9th, 2005, 10:59 pm

I am now at Mayo, and convinced I am a hopeless case. I am a combination of ALL of the worst fears and symtoms any *** site has to offer. I am no longer trusting any of my EMG's, as I am convinced they were done in a time before the true onset of my case of ***. Now, I am ill, and I am testing myself constantly.

One leg stands, jumping jacks, double and triple "tonguing" songs (if any of you played an instrument in band growing up, you know what this is - you make a T-K or T-T-K pattern with your tongue to help you make beats go faster), taking deep breaths and then counting as fast as you can to see how far you can get (it was a test described in Tuesdays with Morrie to test oxygen/breathing strength). These are going on all day long as I wait to be seen, stand by for earlier appointments, and drive back and forth to Mayo. Somewhere, I syummon up the strength to love and play/care for my kids as best I can...though I am tired and very "weak" I always read my son his nighttime stories (of course VERY focused on how clear my voice is, how the words are coming out, and whether my voice is still deep or becoming nasal). My wife, though proud of me for trying, is feeling bad for me (obviously). And I cannot rest in bed long, because I feel guilty she has to care for our kids by herself (they are 3 and 1). So, I do what I can.

My history is well documented by now -

Twitching - starting with lower right eyelid, then thigh, then everywhere (and I mean EVERYWHERE - scalp, ear when laying on it, tongue, neck, chest, arms, boy parts, glutes, hammies, legs, everywhere) for 19.5 months

4 EMG's to date over close to two years, all normal. No fascics even. 3 times legs, 3 times arms, twice back, once 3 limbs, once 4. The neuros by admission were performing mostly at my insistance for reassurance beyond the first one each year.

Blood 2005:

Sed rate - normal, ANA - normal, CK - normal, diabetes (fasting sugar and A1c) - normal, ALT - elevated (63, with bilirubin mildly elevated and AST normal, confirmed Gilbert's syndrome - benign, fatty liver), all electrolytes always normal (sodium, potassium, chloride, calcium, etc.), white counts elevated in Sept, and October, and lymphocytes elevated in October. All mild, and indicative of some sort of mild infection. The pink eye was just as easy an indicator of that, in my humble opinion! Lyme - IgX, Western Blot, and specialy lab in CO whose name escapes me - all negative (and the docs say if you get a negative result from that CO lab, you DEFINITELY don't have Lyme, as they are notorious for false positives.

Thyroid - T4 and Free T3 mildly elevated in October. Sent for ultrasound. Mild multinodular goiter detected, small nodules poorly defined. With TSH remaining normal over 3 tests, and small nodules, cancer unlikely. Also, values returned to normal in all three counts in November, and endocrinologists viewed whole thing as unremarkable and not likely to be causing anything at all. Honestly, I suspect they are right. Testosterone total low, but bioavailable is normal. This apparently means I have low testosterone (COMMON in highly stressed individuals) but the body is using plenty of what is there. No supplementation needed. Aldosterone, catocholesterides (sp?), I-5HAA all normal. Cortisol (24 hour and periidic saliva) is still pending as I write this. Myasthenia antibodies panel was negative, and repetitive shock test was normal - no MG. Honestly, that was disappointing to me as MG is treatable now, and mirrors a lot of the same symptoms. However, without the eye weakness and double vision, I was unlikely to have this. There are others - too many to mention here.

Needless to say, the workup is full. To date, normal, normal, normal. Only cholesterol, and very mild ALT have ever been abnormal, along with the aforementioned one-time mildly elevated thyroid readings.

Of course a lot of this was not yet known as I sat down with my Mayo doctor to begin a 9 day process there.

When you meet with the doctor, you are given every opportunity to clearly and in detail spell out your concerns and symptoms/complaints. At Mayo, there is no double booking, no fire to put out. These doctors are building the first detailed component of your profile. They want to know everything. And you are now making your case for your own treatment. I went through everything. My tonsilectomy when I was 8. My ongoing weight issues. My chronic stress/anxiety. My mitral valve prolapse and what antibiotics I use when I get dental work done...everything. And in agonizing detail, each piece of the past 20 months. I CHOSE the areas of focus, and spelled out what I felt to be the main areas of concern. Weakness, difficulty swallowing (thick tongue, food getting caught, slurred speech, food/drink coming up nose, etc.), twitching, tremor, blood pressure fluctations, shakiness, this extreme fatigue. Everything I had seen doctors for over the past two years. And you know what? It was d*a*m*n hard to sort it all out and focus on what my most troubling stage was...

This was when I first began to realize what might be happening. But I pressed on. And when the initial evaluation was done, including a transcript of this discussion, a complete physical exam (even the prostate, etc. - YOW), a neurological evaluation, etc., I was provided with a detailed itinerary for the next several days. A cardiac evaluation, endocrinology, yes, a neurological consult with a neuromuscular disease specialist (in this case, coincidentally, a doctor named Sorenson who heads up the *** Center at Mayo - gulp), a gastronenterology visit (the doctor ended up being single, very cute, and very personable... 8) Yes, honey, I KNOW I'm married to the world's best wife!!!, and then a return consult with the internal medicine specialist. Wow. I was also told I could get on waiting lists with each department to move up the appointments if I wanted to try. The system there is remarkable. People go to Rochester and stay in local hotels for weeks. They atre there to get answers, and have a mission. And I've never seen anywhere in the world like Mayo - they know this, care about you, and are constantly doing everything possible to align your appointments, see you early if needed, and help you. But they won't sacrifice the quality and duration of a patient's appointment if you need the time. It is what medicine should be.

The day I came back from the first Mayo visit I was of course exhausted, dizzy (as has been the norm recently), sore from neck spasms, and I suspect very much depressed. My whole body was exhausted from the self checking, nerves, tension, etc. from that day and the many preceding it. But when I returned home and laid down on the bed, I prayed the rosary (as I do much more now), and felt an unbelievable calm come over me. After 20 minutes I got up from the bed to go to the bathroom and my legs felt fine, my neck felt fine, my muscles felt firm/toned (which had been missing for weeks), and I was able to smile for the first time in forever. I also finally had a small appetite, and went downstairs (pain/stiffness-free) to get some ice cream and a little leftover dinner. And I laughed with my wife for the first time in weeks.

I will continue on with the important stuff next...the message behind this Part is a simple one. If you are "suffering" with anxiety about some sleepless nights, or a painful arch, or a slow single hand twitch, etc. as I did SO many times over the prior 18 months, you MUST stop. As I sat in Mayo, and looked over wheelchair-bound patients, people with severe tremor, real weakness, Parkinsons, you name it - it is NOT us. It is not subtle, ominous, etc. It IS real - pronounced, scary, invasive. You know it, you cannot escape it, and it is NOT SUBTLE. You cannot "still run"...you cannot "still carry my kids". It is not a minor shake. This much I now know...


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Postby Mark S on December 9th, 2005, 11:16 pm


WOW WOW. Part I was more dramatic in my mind but thank God you ended up fine - I guess. So ultimately this was bfs? Or did the Mayo Clinic find other issues? Ending is confusing.

I am also very happy to hear Our Lady comforted you in this despair as she so often does. So if your story is a miraculous ending that is WAY cool in my mind. If you discovered peace in Christ, peace in the hand of God, then I am thrilled. In my mind, this is where the solution for all of us is - als or not.

Mark S
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Joined: May 15th, 2005, 11:36 am
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Postby Alien Host on December 9th, 2005, 11:26 pm

well .. I was going to watch a movie.. but now I am glued to this d.a.m.n computer like so some houswife watching The Young and The restless previews for next weeks episodes... maybe we can get some high paying sponsors to put some ads in between these suspense thillers..

talk about getting sucked in...
BFS Is A Mind Trip, It will scare You But Will Not Hurt You

Twitching since 10 2004 with a Dirty EMG, what's your excuse?

PPMA Prayer & Positive Mental Attitude
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Alien Host
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