Changes in Neuropathic Sensations
AnonymousFebruary 13, 2008 at 6:22 pm
Hi all, I was wondering if those who respond to treatment usually experience a chance in the types of neuropathies they are experiencing. I certainly have much less numbness, tingling, and burning in my hands and feet. The sensations have also changed and don’t’t feel the same. Whereas before, it felt more like electrical shocks, now it is like a buzzing/vibration, especially in my hands. I keep telling myself that it is my nerves trying to regenerate. I thought there was a previous post about this, but I can’t find it. Has anyone else had this?
Also, would love to hear from those who were diagnosed relatively quickly with CIDP after onset of symptoms, and how your illness has evolved over time and what treatments you are on. Thanks!
AnonymousFebruary 13, 2008 at 7:32 pm
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.
AnonymousFebruary 13, 2008 at 9:28 pm
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]
AnonymousFebruary 14, 2008 at 8:47 am
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.
February 14, 2008 at 10:53 am
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.
Dawn Kevies mom
AnonymousFebruary 14, 2008 at 11:53 am
Ali, that is strange that the tingling/burning would begin after the active attack, because in my case, I noticed burning/tingling pain about two weeks before I noticed any muscle weakness, fatique, or malaise. The neuropathic pain was my first symptom. But like Dawn said, the disease is so complex and different for everyone. I guess some people can experience one or the other as well? I shouldn’t even try to compare notes, but it is nice to hear what other people experience.
SEC – I had the same deterioration as you, muscles became very weak very fast, it was sooooo scary, I had no idea what was going on. Then it was even scarier when I had my diagnosis and knew what was happening, but hadn’t started treatment yet. I hope you begin your treatment very soon.
Dawn, does Kevin ever complain of the tingling/burning or has his been mostly weakness and fatigue? Is he feeling okay now from his last IVIG?
I am sitting here waiting for my home nurse to come and give me my IVIG. I will get 1000 ml – the bag is huge compared to the others for the loading doses. This is my first maintenance dose. I am anxious to see how long it takes. I am guessing about 7 hours.
AnonymousFebruary 14, 2008 at 11:57 am
Oops, Kat, I forgot to mention I am about 80% as well. I can do most of what I used to do, it is just a little harder, and a little more tiring. I do have some days that are worse than others, do you have that also? 85% is pretty good though. I am glad to hear others can carry on pretty normally.
February 14, 2008 at 12:06 pm
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.
February 14, 2008 at 12:10 pm
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!
AnonymousFebruary 14, 2008 at 1:34 pm
Dawn, hi, yes, I checked, it is 50 grams. My max flow rate will be 200. It started at 30 about an hour ago, and I’m at 90 now. In another couple minutes, she will bump it up again. I tolerate this stuff very well, but I am also on high doses of steroids, so that could be helping a lot. Yes, it is already mixed in a bag, ready to go when it comes to my house. I think I may feel slightly flu-like by the end of the day, I had a little of that before, but nothing major, certainly nothing to complain about.
So Kevin gets a loading dose each month, spread out over 4 days? How does that affect his schooling? Do they stick him each time or does he have a port? I hope he’s feeling better now.
I have a Kevin at home too, he’s almost 7.
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