How long did it take to get weak, for results?

Hello Lori,

Welcome.

I’m sure you’ve read many times ‘every case is different!’ Well, our similarity could be the slowness of the progression. From first onset of my left foot drop to my right-handed weakness, more than 30 years went by. I guess the similarity ends there.

You asked about response to IVIG. In my case, I had five days worth over five days. On the Monday following my week in the hospital, my bilateral grip strength increased from 11/21 lbs to 18/55 lbs.. This is the measured number by the Occupational Therapist using the “Jamar” dynamometer.

So, you see, initially I had what could be called ‘rapid’ improvement. Particularly on the left, stronger side, because the right is not expected to improve due to the degree of axonal loss.

However, the effect did not last. Ultimately the doctor stopped the infusion as ineffective after about 5 months of 2 days in a row once a month treatment at .4g/kg each day. My grip decreased to as low as 5/35 after the infusions stopped (probably even lower, we didn’t measure it). I could barely open the car door on our trip to Mayo Clinic.

Mayo Clinic stated perhaps my previous infusion was neither aggressive enough nor often enough. Mayo restarted me on IVIG and since then I have improved to 11/51 lbs.

Oh, subjectively, a lot of little things improved. But, that is my opinion, see? It was nothing the first infusion doctor measured. Heck, they didn’t measure anything! Mayo on the other hand are very specific in what they measure. When I returned this spring they said “yes, your emg/ncv are improved!

Mayo also said it could take a month or more following each infusion to see results and that I should continue infusions for at least one year.

I was surprised by your diagnosis because it’s another one I haven’t heard of. I looked it up. Here’s what the NIH said:

“Benefit was reported for 34 of 38 patients (89%) receiving immunotherapy and was marked in 50%. CONCLUSIONS: The spectrum of neurologic manifestations and neoplasms associated with voltage-gated potassium channel (VGKC) autoimmunity is broader than previously recognized.”

Read the whole deal here: [url]http://www.ncbi.nlm.nih.gov/pubmed/18474843[/url]

In another post I gave a link to the pharmacists’ society IVIG spreadsheet. Seems to me they list the 1/2 life of IG at around 21 days. So, and it’s certainly only my opinion, your receipt of 5 days’ worth of IVIG in 2 days once every three months leaves a lot of time for the ‘effect’ to wear off.

Sorry, can’t speak to the thymus nodule except to say get at least one more opinion from some great place.

Good luck.