His neurologist works in the Peripheral Neuropathy Department at Methodist Hospital. I found this on the internet, and gave them a call, made an appointment.

I knew to print out and bring the Liza Jane printouts and showed them to Dr. Goldfarb. She said "yes, I have the exact same tests that I order for people with Peripheral Neuropathy.

She then did (and she did this herself), the emg and the nerve conduction test.

And she then ordered all the blood work. Don't know exactly when she ordered the lumbar puncture, but she said something to the effect "Alan, there is a treatment called IVIG, but it's usually indicated if a person has an auto-immune disorder. Auto-immune can present with Neuropathy". And she said "it looks like CIDP, Chronic Inflammatory Demylinating Polyneuropathy".

So she ordered the lumbar puncture, and when we were sitting in the office waiting for her to come in, she looked at the paperwork and she exclaimed "Oh, look at that, he has protein in his spinal fluid" I said "what does this mean?" and she said "well, it can be indicative of an auto-immune, and it definitely makes him eligible for IVIG. Then she got the IVIG paperwork (with his insurance company) in order. Took a while but it got approved.

And when he did the first five infusions (in the hospital), I remember she came to visit him and I said "isn't there a fool proof test to see if he has this CIDP, and she said "yeah a nerve biopsy by the ankle", and I said "oh the Sural Nerve Biopsy". and she said: "boy you've done your homework" and I said "no, we have just been doing this journey for almost 18 years, and after 18 years, you learn the terminology" She then said "you don't want him to get a sural nerve biopsy".

Last month, he saw his neurologist for a follow-up. I was not there. She did a complete neurological exam, with him walking on his toes, on his heels, making him balance, walk a straight line, etc. She noticed that his balance was much improved. It had no effect on his neuropathy pain, but it did improve his balance. Then she said "okay, we are now reducing your twice a month (called a double load), to one time a month home infusion, and he just had this last week. Tolerated it fine.

So, from what I can see, it does nothing for the pain, but it did improve his balance. I really thought this would take away his pain but I found out it (at least in his case) didn't do that. Maybe someday it will. He is now doing what I do and takes the methyl b-12 every morning.

He is also battling a foot ulcer (for over a year) and now wears the oft-loading shoe. His podiatrist is seriously considering sending him to a wound treatment center, (which I thought a person has to go and stay there for 6 weeks), but I found out it's a once a week visit. I had no idea. I also don't know,and this concerns me (does a person's HMO approve a wound treatment center if the patient is NOT A DIABETIC??? Tomorrow we find out. I'm called various wound treatment centers.

During his last visit on thursday, to the podiatrist,, the doctor changed the inside of the oft-loading shoe and padded it. Alan wore it for one day, and got a blister, so I looked in, rearranged the hole, and he is walking better. He kept saying "I told you, you should have been a nurse". He goes back to the podiatrist on Thursday, and we'll find out more stuff about his ulcer. This ulcer is taking a long long time to heal. Very frustrating.

So Liza Jane, I do hope I answered your questions.

Take care,
Melody