Severe Shaking And Ataxia Without Trt.

Short Version: I’m 32. I’m a single orchiectomy testicular cancer survivor. I shake violently and require a cane to walk without testosterone replacement.

Long Version:

It started last summer. After a night of chills, sweats, and generally feeling flu-ish, I collapsed on the bathroom floor and was paralyzed for 45 minutes from the neck down. Nothing remotely like this had ever happened to me before.

After that, I started falling as my right quadriceps stopped working at random. Some muscles on my left arm followed. These two opposite limbs remained the most affected. Then twitching began. After a few weeks, severe convulsions followed.

I was hospitalized 5 times, saw a ton of doc's, and had even more tests. The convulsions spread to my entire body, and increased in severity. Even my eye lenses would twitch in and out of focus differently. My pupils would twitch independently of each other. My face, my neck, my abs, my back would rattle the hell out of even the most stalwart of hospital beds. I pulled muscles. I would shake for hours, eventually exhausting myself - only to shake in my sleep.

These were not seizures. I had 4 EEGs. I had a partial EMG. When unaffected muscles were shocked, normal results. When ‘bad’ muscles were shocked, convulsions violently spread to my entire body. I had a full neuro-psych eval and several weeks of therapy to rule out psychological causes. I had a lumbar puncture, 2 MRI’s, a CT, x-rays, blood work up to wazoo. And probably more that I can’t remember.

I tested positive for west nile IGG, but not IGM. Large dosages of Keppra and Valium would stop me shaking, but not let me walk without a cane or walker. I was drugged into oblivion.

After 9 months, the symptoms slowly started to wane, but I still was drugged up, and barely limping with a cane. And the shaking would always return when I would lay down. Inverting my head caused SEVERE shaking everywhere.

Before my neurological disaster, I had more subtle neuro problems due to testicular cancer and chemo 5 years ago. (3 cycles BEP) No hot or cold feelings in my feet. Numbness in my arm. Tinnitus. And of course career ending chemo-brain.

I had my testosterone tested as part of a fertility test. (I had been curious ever since cancer) My T was low, so I thought why the hell not try TRT.

I was putting off returning a call to my disability lawyer when I applied my first dosage of testosterone. My urologist said it might take a month to feel a difference. I had nothing but spare time.

A few hours later, I felt a surge of energy; vitality I hadn't felt in years. Later that night, I got up to get a glass of water only to realize that I didn't need my cane to walk anymore! A few days later, my shaking and falling were 90% gone. And amazingly, I could read and think again. The emotional boost was another bonus.

Over the next few weeks, I told my disability lawyer to hold off on my claim, and questioned the dozen or so specialists that saw me. Nobody had a clue as to what exactly was going on with me, or why TRT caused such a turn around.

I'm taking the spring and summer to heal physically, mentally and emotionally. I still have issues, some weeks where I must walk with a cane. If I stop taking testosterone, I shake again without fail. If I use a certain muscle too much, that muscle will probably shake or just not work. I go for jogs, but often have to call my wife to pick me up because my legs have stopped working. I still try though. :-) I've required increasing amounts of testosterone to continue my muscle control.

In the fall, I'm returning to school to study biology. I'm not satisfied with the current state of medical knowledge, and want to make it better. I also feel I owe a debt to science. Cancer and a foggy brain cut my nursing career short. But now I feel smart again for the first time in years. I have a chance at a normal life I never thought I'd have. It's an amazing feeling.

But still, I'm curious as to what the hell happened to me. I've asked every doctor I know, and spent a good amount of time at my university's medical library. Has anybody else experienced this?

Thanks for reading.

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This is my leg shaking.
youtube.com/watch?v=fChqv It got much worse than this. And spread to my entire body.

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