Changes in Neuropathic Sensations

Hi Deem,

My sensations do seem to change quite a bit — sometimes tingling, sometimes the electric shocks that you describe. I have no idea why, but you’re not alone there.

On my case, I’ve had CIDP for about 11 years (:eek: ), since I was 25. It took four years to get a diagnosis, however, and the disease went into remission several times during those four years. I’m now on a regular course of IVIG, trying to slow down and eventually stop the treatments, and no other medications. IVIG keeps me at about 85 percent normal.

kat

I know its hard to tell sometimes 😡 , maybe this will help identify some pain a little better – This is how it was explained to me, and even though I knew it, it clarified it a little more.:)

There are two types of pain related to GBS, and I would think CIDP would fall into pretty much the same. The accute pain phase is called Nociceptive pain, and of course Neuropathic pain. Nociceptive pain is the kind that tells us damage is taking place, and this pain is generally taken care of with Tylenol, Advil and some stronger like vicodin etc. This pain is often located around the spine, lover back buttocks, around shoulders and hips and often aches and cramps. Sometimes there will be stabbing pain with movement but may not be clear where it is coming from. Neuropathic pain starts once the active phase has stopped, and obviously the damage has been done, thats where the discomfort, tingling, burning and stabbing pain comes from. Sensitivity to touch is also associated with neurophatic pain.

Exert below taken from [B][I]Chapter 9 : Chronic Immune-Mediated Polyneuropathies[/I][/B] from book by ds. Parry and Steinberg on GBS Diagnosis to Recovery.

Page 206: [B][U]They speak about CIDP pain here[/U][/B]
…..[quote]As with GBS, the pain may be neuropathic pain, due to nerve damage, [B]or may be musculoskeletal, arising in joints and muscles[/B], as a reasult of weakness, Neuropathic pain is generally felt on the surface of the skin and is burning, stinging, shooting, or stabbing in nature. It is most prominent in the feet and lower legs, ……. Musculoskeletal pain is generally felt in or around joints and is worse with weight bearing and can be alleviated by appropriate bracing, and anti-inflammatory drugs such as naproxen, ibuprofen, or acetominophen may also help.[/quote]

Deem,

I was diagnosed fairly quickly. I am a former world class athlete, knew my body very well, and just knew that something was wrong…so I got to my local physician right away. He immediatly sent me to a local neurologist who tested me and immediately sent me to the University of Minnesota Neurology Clinic. This is who made my CIDP diagnosis….so my diagnosis was very quick.

My muscle weakness is getting worse almost every day, along with cramping and joint pain…etc. I have not begun my IVIg treatments as of yet, we are waiting for the insurance company to approve the treatments. I plan to post how things go once my treatments begin. Hopefully I will be able to live a fairly normal life since I was diagnosed so quick. We shall see.

Feel free to PM me or message me on this page if you have questions.

Deem,
The post that Ali made with the exerpt from Dr. Parry is EXACTLY what happened to Kevin. From start to finish, (first symptom being tired, difficulty lifting legs when running, to not being able to walk, hold a pencil, climb stairs or get dressed, to completion of loading dose of ivig) it was about 8 weeks.

Kevin during the begining phase would always ask for neck or shoulder rubs and complained of muscle pulling.

After treatment, EVERY TIME, his ankle joints and wrists and fingers hurt him. Thankfully it starts right away, otherwise I would be going psycho thinking he was worse, but by about week 2-3 out of our 4 week treatment, his ankles are better. We have come to the conclusion that his nerves heal because the ivig stops any additional demylienation, therefore allowing the nerves to repair. I beleive, in my little mind, that the ankles and wrist and fingers hurt because the muscles were weakened for the 6 months prior w/no ivig, so now that the nerves are sending the messages to the muscles, the muscles have to tone up and stregnthen back to where they were. This is just what I think and have observed in Kevin. I cannot beleive how complex this illness is. So many things are affected, it truly is a whole body condition.

Good luck!
Dawn Kevies mom

Deem,
I am not sure, Kevin gets 25 grams per day over 4 days, and I think, 25 grams is 500ml. It takes Kevin 6hours and 40 minutes with a max flo rate of 39. So you will probably be faster than that. If you start feeling funny, ask her to slow down the rate.
Kevein really only complains of pain as I said AFTER infusion. Sometimes it is aching in the ankles or pulled muscles. Now that I think about it, he frequently complains about a groin pull sort of sensation. Keep in mind, Kevin is 11 years old and a boy, so after treatments, or whenever he is playing with his friends, it is hard boy playing, running in the yard with hills for hours having his little airsoft wars with his friends. So he puts alot of strain on his ankles and wrists.
I suspect as these loading doses keep the attack in check, the nerves will eventually heal (his reflexes have returned at least by half since Oct.) and the muscles will tone up as well, therefore eliminating the achiness, pulled muscle feel.
Dawn

Something else,
Do they pool the ivig into a bag, or are you getting S/D and it is mixed? (regarding your statement a large bag?) Since my math is awful, maybe you can ask how many grams 1000ml is.
Kevin has his right out of the vials. We either get 2 tenmg bottles and one 5 or one twenty and a five, whatever they have available, but we go straight from the bottle. Everyone is different!
Dawn