Hi there Kathy

IVIg takes time to work. You can’t necessarily expect that one loading dose is going to make the painful sensations go away.

I have had sensory CIDP for 15 years, and have been doing monthly IVIg for 8 years. If I go longer than that, the pain starts to come back. It took awhile for the IVIg to start to really help. There are times, tho, where the sensations are more severe, and I like to think that it is the nerves repairing themselves. Apparently, that can hurt more than the initial sensations!

I also take methotrextate, an immune suppressant that has really helped take the edge off the pain. It does take awhile to work, tho, so you have to be patient.

If your husband is in pain, then he needs to get some medication. He should try and get into a pain clinic, or if your neuro is good, they can prescribe. I use gabapentin myself, along with tramadol, and that is a combo that works for me.

The sensory issue is very difficult. Alot of people don’t think that CIDP is painful, so your hubby needs to tell people loudly about it.

If I can give you any other support or info, let me know. Happy to give you my experiences…!

Cheers
Debs

Hi Mary Beth

I was diagnosed 10 or so years ago with a sensory neuronopathy, after an episode of acute renal failure. It primarily affects my hands, lower legs and feet. I have virtually no feeling in my toes, half of my feet are pretty dead, and my hands have a “stocking glove” type of numbness and pins and needles, which is pretty standard for this sort of thing.

Over the years, things have slowly deteriorated; my balance is pretty shot, various exercises are very difficult, if not impossible, my joints are so stiff and sore in the mornings – I am starting show signs of inflammation, and the neuropathy has slowly moved up my body. To make it worse, my spinal fluid shows no elevated protein, and my EMGs, etc are only mildly off. However, my anti-bodies are all over the show.

My main difference is that my neuropathy is extremely painful. Without medication, I can’t stand to have clothing touch me, much less anything else — it causes a burning that lasts for up to 30 minutes. I take a cocktail of drugs to manage the pain, on a reasonably successful basis.

I have been told that a purely sensory neuropathy is fairly rare. At the end of the day, I have been dx with “CIDP”, because of the fact that I get relapses and remission type periods. I have been on IVIg for abuot 5 years; I get it every four weeks for two days.

There are a couple of us on the site with similar types of symptoms. We are happy to help you out with any info we can give!

Take care and nice to meet you.

Debs