Okay,for those of you who don't know what Alan has ultimately been diagnosed with (in order to be eligible for IVIG), his diagnosis is CIDP or Chronic Inflammatory Demylinating Polyneuropathy.

Alan's mom had Guillian Barre Syndrome when she was 45 years old. She died at 53 years old.

We have told every single doctor that Alan has seen about his mom having GB. Every single one of them said "oh, it's not related, blah blah blah".

By the way, Alan had some sort of Epstein Barre or Mono thing that put him in the hospital at the age of 32. It was never really revealed what he had, they just put down "fever of unknown origin".

So fast forward him to age 45 when he gets the pins and needles stuff and was diagnosed all these years as Idiopathic Neuropathy.

Dr. Goldfarb ordered the Spinal Tap, found an elevated protein and got him the IVIG.

Now his Primary Care guy is Dr. Fred (who has so many patients, he doesn't really remember all the background info on them). He sees Alan once a month, sometimes once every two months, gets him his samples of plavix and often sees him at the gym.

Today, Alan just came home and said "I just met up with Dr. Fred at the gym and I have some interesting stuff to tell you".

Dr. Fred said to Alan "tell me again, exactly why you are getting the IVIG, Alan?" And Alan goes, "Well, they found elevated protein my spinal fluid". And Dr. Fred said "oh, wow, elevated protein is an indicator of Guillian Barre". and Alan said "My mother had GB when she was 45 and I got the neuropathy when I was 45". Dr. Fred said "Whoa".

So I just googled up Guillian Barre and guess what it's a relative of???????

take a look..........................................

Chronic inflammatory demyelinating polyradicalneuropathy (CIDP), is considered to be a related form of Guillain-Barre syndrome. It is much less common than GBS, and evolves much more slowly and usually is longer lasting. Some CIDP patients experience periods of worsening and improvement, and individual relapses are often confused with GBS.
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Now how come over the past 18 years, NOT ONE DOCTOR WHO ALAN TOLD ABOUT HIS MOTHER, NOT ONE DOCTOR EVEN THOUGHT OF CIDP?????

I am absolutely amazed at the connection....

Any thoughts????

Melody