Monday, March 09, 2009

I Have No Permanent Nerve Damage

No peripheral neuropathy.

No CIDP - chronic inflammatory demyelinating polyneuropathy .

No sign of nerve damage.

You see, I had to go see a specialist in Boston because Dr. Bigus Dickus got me all upset back in February. Which was actually funny because I didn't think I could get more upset than I was going in.

Six weeks into chemo (mid November) I started to experience numbness and tingling to go with my fatigue, insomnia and heartburn. Back in January I fainted at work and had to be imprisoned....I mean hospitalized for four days. The numbness and tingling progressed to pain. On January 22nd when Dr. Miller told me that chemo hadn't produced a "durable response", I told them all to screw - in the nicest possible way, of course!

I believed that the numbness, tingling and pain were a result of the dexamethesone. I knew that it would take at least two months to recede. Possibly longer because it wasn't just dex, but combined with Rev. But the symptoms got worse.

All this for cancer that isn't symptomatic??????

Anyway, I saw a local neuro who said my symptoms were the result of three unrelated diagnoses and none were the result of chemo. First he said I had a problem with my legs because of diabetic neuropathy - I told him my blood sugar results were always normal - a more extensive test proved him wrong. Next he said my insomnia was sleep apnea, lol, even though OSA *wakes* people or makes them wake unrested. My problem was the inability to fall asleep. Which Ambien had solved, so no OSA. Then he said that the pain in my hands was carpal tunnel, particularly bad in the right hand even though the pain was worse in the left....

In the middle of the EMG to *prove* to me that the carpal tunnel in my right hand required surgery he saw something he didn't like in my left arm. He abruptly stopped the test, and referred me to a specialist because he said I had CIDP.

This would be very bad because it was related to the multiple myeloma. That would mean I was not asymptomatic. It would mean I would have to go back to chemo and quickly.

I sent a fax to Dr. Miller and said that if Dr. D was wrong about diabetes, wrong about carpal tunnel and wrong about sleep apnea......why did I want to go see his specialist?

Dr. Miller chose Dr. Thaler.

Dr. Thaler asked questions, performed tests, ordered blood work, scheduled a complete EMG, since the other was stopped in the middle.

Then he asked what my concerns were. I told him that I didn't want chemo to put me in a wheelchair to fight an imaginary cancer. He asked if I had discussed with Dr. Miller that I thought my cancer was imaginary (my sister Grace was making faces across the room at me). I said yes we discussed it. He asked "Does Dr. Miller tell you that you are crazy?" I told him no, Dr. Miller was too nice and polite for that.

So, Dr. Thaler told me that I would have to find some other weapon in my fight to stave off chemotherapy. He said the chemo had caused no nerve damage, permanent or otherwise.

It may be something as simple as pernicious anemia.....vitamin B12 deficiency. But we will discover the cause.

He would not be drawn into my theory that my IGA numbers are nothing more than my body's reaction to chemical exposure in my youth.....and would never be anything else.

Grace liked him.

I am still asymptomatic and I am thrilled.

I am that much closer to going to the Milblog.


Tom Goering said...

All that sounds fantastic!

One day I got home from work and as I walked from my car to the house I passed the passenger side of Bonnie's car. The whole passenger side was damaged. I quickly entered the house and asked her what had happened, she looked at me like I was crazy and looked at the car - she stated it must have happened while she was parked at work, we argued a bit because the car was obviously moving when the damage occurred, the front wheel must have been turning. We got the car fixed and life went on.

A couple of months later I was awoke out of a dead sleep after hearing a crash in the bathroom, I looked up and saw the light was on but didn't see anything - I figured Bonnie tripped on the scale or something and I went back to sleep. In the morning I woke up, Bonnie was laying next to me sleeping. I looked at her face and she had a big black eye. I woke her up and asked what the heck had happened... she had no idea.

The same morning she was taking a shower and I was getting dressed for work. I heard the crash of her falling in the shower. I ran, opened the shower door and found her not breathing and unconscious on the shower floor. I was scared out of my mind. I pulled her out of the shower and started to preform aide when she started breathing on her own - she stood up, I told her we were going to the hospital. We got dressed and drove to the emergency room. When we got there the nurse asked when the issue was, I described it to her and Bonnie looked at me in disbelief, she didn't recall anything that had happened.

After a week in the hospital and a bunch of doctors they determined she had a seizure disorder (first thought they had was I was beating her...idiots) - not one where you shake but one where your body just basically shuts off, she has been on medication ever since.

Every 3-4 years since she makes an unqualified determination that she no longer needs the meds and stops taking it without telling me. She starts right back on it after another cut or bruise from falling down - Damn, she can be stubborn. I have a real fear one day she won't wake up.

I need her to read your posts (getting her up to do anything on the computer is a pain in the arse) and see that getting 2nd and 3rd opinions from doctors before making medical decisions based on feeling is the absolute right thing to do. Heck, I should have her call you.

AFSister said...

YAY!!!! That is GREAT NEWS!!!!

BostonMaggie said...

Tom - I am not very cooperative with my doctors, I doubt you want me coaching her, lol. But I would be happy to talk to her anytime.

AFSis - thanks!

Tom Goering said...

You may not be but you continue to seek information - I talked to her again just after I posted and she once again assured me she is taking the meds and then let me know she is supposed to have a follow up visit when we get back from Florida to check medication levels... she "forgot" to tell me that - it is now on the calender :)

BostonMaggie said...

Ah - Bonnie doesn't have sisters? My sisters don't let me get away with that shit. I am rarely in the room alone with a doctor. There is always someone there to snitch on me.

Tom Goering said...

She has a sister, well, maybe better described as a soup opera.. the woman has 60+ dogs all living in her house, long story made short, she is no help.

Stella said...

I am absolutely thrilled to see this post. Why be patient?

SK said...

Hot damn it's party time! Or at least close to party time :) Grats!!

As for you behaving....nah. I hate having to go to the doc and I ask a million questions. Nobody knows YOU better than you do, so keep up the good work! sisters aren't going anywhere near my doctors. lol

Steeljaw Scribe said...

EMG...urgh, I feel for you, literally. Had to endure one after my first (failed) lumbar surgery and the fact is was a very humorless neurologist who was administering it didn't help (I'd asked midway through if this was permitted by the Geneva Convention - the next needle jab seemed more than a tad bit harder...). Thank heavens I joined up with a brand new neurosurgeon who'd just arrived on the scene @ Bethesda from his residency at the Cleveland Clinic. A whole new approach, new hardware and 4 years later only get the occasional twinge when there's a change in the weather.
You go right on challenging the docs - a questioning, informed patient is one on the way to recovery. The good ones encourage it, the bad ones...well, you get the picture.