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.
4 years ago