Greetings. I have a question about effects of IVIg on the different types of nerves.

I'm about a week out from my 3rd monthly Ivig treatment. I never had a "bad" case of CIDP but I have a smattering of ner problems: my walking is uncordinated, I have burning pain in my thighs, and I have weakness in both thighs and a little in my right shoulder. I also have slurred speech when I am tired along with some urinary retention and constipation. Protein in CSF; EMG fairly normal; reflexes very slightly decreased.

So my question is this: Since getting the IVIG some things are better, some not. For example the slurred speech is better and constipation is normal. Urinary retention is better most days. Leg strength is better for some things (climbing stairs, raising from a seated position) but not others (walking on slope,standing for any legth of time). Still wobbly walking 10 feet but stamina is better walking further -alot further. Can climb up a flight of stairs 2 at a time but have to hold on to handrail with a deathgrip going down stairs for fear of losing balance.

So strength is up slightly; autonomic nerves slightly better; but balance isn't better and pain feels the same or slightly worse.

Does Ivig affect different nerves differently?

I think that Motor nerve (strength) dysfunction maybe myelin-related and gets better quicker. Pain nerve dysfunction may be more axon-related damage and may take longer (or never!) to get better. What about balance? where does that fall? It feels weird having increased leg strength but still having decreased coordination.

Did anyone else have these effects and did everything even out over time? Or am i going to be a cidp-er that has muscular legs but can't walk in a straight line?

Wow, thanks for the reply!

No, I have not had any official autonomic testing. I got the label from my clinical symptoms.

This all started with some erectile dysfunction followed closely by incomplete bladder emptying. I'm young-ish and urologist did work up: Urological ananomy is normal with no prostate enlargement; the problem appears to be neurological.

I then developed the leg weakness and leg pain over a few months. During that time for approx 3 weeks, I was experiencing orthostic hypotension where change to a standing position or sudden exertion (like climbing the stairs) would cause the "grey outs" as you described. At the same time my resting heart rate went from the 60's to around 100 bpm. Since that time the "grey outs" have gone away and my heart rate has settled into he 80's. I also lost my sympathetic response to low blood sugars (- I'm a type1 diabetic, well controlled). I developed some constipation as well. That "hypoglycemic awareness" and constipation are slightly better since IVIg.

My visual acuity is worse and I now have touble shifting between near vision (my computer) and far vision (across the room. these are signs of autonomic involvement as per my neuro - but thankfully, they are getting better with or without IVig. Even the ED and urinary issues are a little better.

As per my PT and doc, I do have a positive rhomberg but balance with eyes open is better. Dark rooms at night are still my kryptonite!

My formerly numb toes occasionally burn but then quickly "normalize". So as stated in my first post, there is a little improvement in all except for the leg pain and back burning. If anything, they are a little worse. Hopefully, they will respond eventually. I use lidoderm patches sparingly because while they help tremendously with the pain, they can make my thighs feels numb and therefore walking becomes more wobbly. Trying to stay positive.

I used to do pool therapy and I'll try to go back on the weekends and do my old exercises.