Finshed my 5 day loading

Willie,

Good to hear you have had some progress with the latest treatment. Between the Doctor and the Senator I hope you get some relief from the challenges you are facing. Please let us know what happens.

Willie,
Personally we do not have any experience with the sural biopsy, but many on the site say if they could do it again, they would not. Apparently some have long term pain at the site. If they already confirmed cidp, why do they need another test? The emg is evidence, did they also do a spinal? Plus you present physically and IMPROVED with cidp.
Axonal damage means the demylienation has gone through the mylin sheath and has gone to the center of the nerve (axon) Being that you noticed some improvement, I would suspect in those areas there is not axonal damage. Other areas may not and might not benefit from ivig. They take longer to repair as compared to an inflamation on top of the myelin sheath(more than likeley your immediate response from ivig was addressed to the inflamation on top of the myelin sheath) That is how it is for Kevin too.

It is good news that you feel results in some areas. They say the nerves repair at a rate of 1mm a day, provided you are keeping any additional demylienation at bay. So, as I mentioned, those areas will take longer to notice a difference as compared to the inflamation.

How refreshing that your doctor has your best interest at heart and has told you to not worry about the medcaid card. I am so happy for you. Good luck and best wishes.
Dawn Kevies mom

I agree about the sural biopsy too. If you don’t have to have it, why do it? And you improved with the IVIG. Keep track of how long you feel your improvement too so you can relate that back to your neuro. And we need a lot more docs like your doc not worrying about your insurance…Gabrielle

Maybe he is just needing more documentation other than the ncv/emg and your response to ivig, as well as your clinical dx. Perhaps because of the insurance issue he has to have proof for someone at the hospital.
The spinal will show an elevated protein level indicative of an active demylienation. Two things, first and most important. HE CANNOT DO THE L/P so soon after the ivig treatment, it most certainly would show no elevation, he would have to wait I would assume at least the full 42 days of ivig’s full life. Second, l/p’s even without ivig prior do not always show an elevation in people w/cidp or gbs. I imagine he was contemplating the sural to see if there was onion bulbing to indicate there are new demylienations. Picture an onion, raw. You know how it has layers? Well, each layer is indicative of a new demylienation after an old one has subsided. Each layer representing the new demylienation. I hope I did not confuse you.
Dawn Kevies mom

Willy LP is Lumbar Puncture or in other words Spinal Tap

Sue

When Kevin was in the hosp. last March, we were trying to solidify the dx between gbs and cidp. There was marked weakness after a six month period of no ivig, being that the time was so long in between, they just wanted to make sure it was cidp. So they were going to check the spinal fluid via l/p or spinal as you know it. Anyway, the resident had difficulty (second time doing one) and we stopped the procedure after 5 attempts. At this point, we had one day of ivig, I questioned if the results would be compromised since ivig was given the night before (first of 5 days) The doc said w/in 24 hours it would still be accurate, but anything after would be pointless. If you think about it, you had visible improvement I think by the third day, so you KNOW you have stopped an active demylienation. Maybe without insulting the doc, since he has been on your side this whole time, you could ask if they could do the l/p in 42 days from the first day of your treatment. IVIG lasts 42 days in the body, that is its full efficacy. It could be less in you, or exactly that. Everyone is different, depending on their cidp relapse timing. Also, this could give you and the doc a chance to document when symptoms recurr, keep a diary. Then you can figure out what treatment plan will work best for you, and the ivig will be out of your body allowing for a more accurate result w/the l/p.

As I mentioned, some do not even ever have an elevated protein level with the l/p, even before ivig, so if this happens, don’t be alarmed. If the doc is needing concrete evidence other that clinical presentation, ncv/emg and response to ivig to prove to the hosp. or whomever, he may at this time review the possibility of the nerve biopsy. This would be concrete in establishing different demylienation cycles that you have gone through. Good luck!
Dawn