Ok my first attempt st a post, it won't be longand rambling. Just curious, how can one be completely numb and at the same time feel so much pain? I know my body l/brain is confused but really?
I feel your pain and your numbness. It's because there are different types of nerves that serve different functions and they occupy the same spaces in the body. Right now, my legs and feet are pretty numb but I can still walk and when I do walk, it feels like there is an electrical sensation that goes up from my feet into my legs up into my knees all the while those same areas feel like they are on fire.
CIDP is a nerve root disease. What is a nerve root? The nerve root emerges from the spine... not to be long and rambling, so here is a good place to start:
http://en.wikipedia.org/wiki/Spinal_nerve
Sensory (numbness, pain, etc,) nerves sends impulses UP to the brain using the posterior column of the spinal column, motor (movement of muscles commands) impulses are sent DOWN from brain or lower neurons ( anterior column, also the reflex command initiator in the spine)... too complex, then start reading. But, fix the problem or long term numbness and pain cause other problems.
CIDP is chronic so you have the rest of your life to bone-up on the subject.
Then again, you could have a spinal disk problem or a myriad of other conditions that cause numb-pain-grumbling-yuckies, etc.
Walk, swim, move and pet a cat or dog for relief.
Thanks for the info, much appreciated. I have been reading a lot about CIDP since my diagnoses and I will continue my research... I know all about the long term, and until 4 days ago it "wasn't that bad". I had an episode or something and the pain and numbness is no longer just below the kneesbut halfway up my thighs and I feel like I have a pair of too tight shackles around my ankles. Sorry to ramble, been a long week. Off I go, thank you again.
The upward progressions from limbs is a symptom of CIDP. The shackles on ankles, I call it rigidity, not stiffness as that may confused neuroboy. Pay attention to ankles, as many nerves funnel through that area, and can, if damaged, create the conditions for foot drop(s). That is bad news... I have a foot drop and I curse it as Long John Silver and Ahab cursed their missing legs.
Interesting that you mention 4 days. I seems to have many good results and negative relapses based around 4 day periods.
Perhaps the replacement of infused "good" IgG takes 48 hours to replace the "bad" IgG throughout the body.... and also turn against me in 48 hours... but over the many months on IvIG the good-guy IgG is winning.
See... now that is rambling... lol
P.S. You won't really know about the "long-term" until you reach a place in the timeline of the "long-term". If you find a treatment for CIDP, then the "long-term" becomes shorter, a short-term misadventure in life. But the long, "long-term chronic conditions, unresolved, can blind-side you with the reality of this nasty disease.
Thanks for the info, much appreciated. I have been reading a lot about CIDP since my diagnoses and I will continue my research... I know all about the long term, and until 4 days ago it "wasn't that bad". I had an episode or something and the pain and numbness is no longer just below the kneesbut halfway up my thighs and I feel like I have a pair of too tight shackles around my ankles. Sorry to ramble, been a long week. Off I go, thank you again.
I'm starting IVIG as soon as insurance auth goes through, nervous about side effects, any input there would be greatly appreciated.
Take maximum benedryl dosage (I get 50 mg) half hour before infusion and I take 650 mg Tylenol (12 hour type) 30 minutes before infusion. Take infusion at slowest rate possible (I once went 6 hours of infusion because of a reoccurring bladder malfunction... yikes!). Be hydrated. Know your proper body fluid needs: divide your body weight by half, that result is your daily liquid requirement in fluid ounces. Take infusion needle in different veins (if not left in overnight), Check with your own eyes the IgG bottle or bag for your name and to see you that have the correct medication.
Be very kind to the nurses who give IvIG as you'll see them again and again and agian and again... chronic means chronic
I get 240 grams/ month in two bi-monthly sessions, of three days each, at 40 grams per day. I am in a hospital setting so I sleep... and I get a free breakfast and lunch, but of course it is hospital food, so yuck!
IgG is benign in itself, the increased fluid volume, in my opinion, is the cause of side effects.
You really are in command of IgG amounts and infusion intervals. Probably the nurse will report to neuroboy, so be exact as to side-effects and outcomes.
I can attest that the first time IgG worked for me I jumped for joy (really) and cried in happiness. Took months for lasting effects and only with the addition of an immune-suppressant, Imuran. SLowly I'll taper off and see what happens.
Also, physical therapy... start as soon as possible, if needed, and if you can.
Hang in there!
Neuroboy, I like that, says they'll do IV fluids before and after and they'll be coming to my home,, I drink so much water as it is I'm surprised I don'have gills, guess the prednisone or gabapentin bring that on. Thanks.
I don't know what treatment plan they have for you. My own experience: the first protocol was five weeks of high-dose Prednisone, which caused such terrible loss of muscle mass and myriad HORRIBLE side-effects. When that was ineffective at arresting the progression of the ascending numbness, I was placed on IVIG. IVIG has been effective in stopping the ascending numbness, but after 13 months of treatment, I still have not regained any sensation. If it at least stops the progress of CIDP, that's enough for me to stick with it. I have regained some strength. The trouble is that I don't think I'm stronger than I was before they put me on Prednisone. I feel like I'm struggling just to get back to that baseline. I know of many who are diagnosed with CIDP and have insurance companies that force them to do the "cheaper" protocol first, and that's Prednisone. But Prednisone is ineffective for most of them. I feel like the Prednisone does a lot of damage that the patient then has to work long and hard to overcome.
If this is your first, I would advise against home infusion till done under more supervised conditions because the side effects , if they occur, will be in the first couple of sessions. After you know whether or not you will have any side effects, then you can start talking about home therapy. Remember there are some nasty side effects which most of us have avoided but are still possibilities. They are: clotting due to the hyper viscosity of the Ig; renal, heart and brain problems from the same causes - thus the requirement for hyper hydration beforehand to dilute the infused solution. I welcome and bless you as you begin what is most certainly to be a long haul. Many have helped me here, they will help you too. Good Luck Always. Remember stay active in your care and don’t stop researching your condition and treatment, then share the good stuff with
spellbound said:
Neuroboy, I like that, says they’ll do IV fluids before and after and they’ll be coming to my home, I drink so much water as it is I’m surprised I don’have gills, guess the prednisone or gabapentin bring that on. Thanks.
I have always had Ivig at home. I had an issue with low sodium from too much water and 4 ivig in 4 days. My nurse was great and made sure u went to hospital. I have axelacare come and my nurse is now my friend. I’m so glad to have it at home. This disease is so weird with numbness, weakness and horrific pain. Ivig helps my pain alot and prednisone helped a lil when I was taking that. Sometimes in the weeks after ivig I can walk 20 feet for 1 or 2 times a day or even stand for 2 minutes. That’s amazing! I’ve only had this for 18 months so I keep learning. There’s also a really helpful cidp Facebook site. We have to stick together and learn all we can from each other.
My best advice is to find a physical therapist that understands your condition and concentrates on balance issues. I took all of the info available on cidp to therapist. While he knew about cidp and gps, he also read and researched cidp. Two years ago I could not walk up or down a curb. Now walk almost like a “Norma” person with no assistance. On Ibig for two years every three weeks.
I believe CIDP is a misunderstood disease by many including myself. I have had this disease for over 20 years and some of the country's finest medical neurologists have just recently been able to diagnose it specifically as CIDP rather than just the catchall Poly Peripheral Neuropathy (which it is) in the last year. My symptoms started with numbness in my lower legs which worked it's way up to my arms and hands.
I have regained a lot of my strength due to the IVIG therapy they give me every 4 weeks. I find myself feeling better when I exercise and stay active. I also have experienced less pain with the IVIG. It has not been a cure all but it has helped me but everyone seems to react differently.
Good luck and God bless. Hang in there!
I would concur that different people have different reactions to the IVIG. Drinking lots of fluids is certainly helpful. The incidence of bad side effects is really small given the potential benefits. After 7.5 years, I am steady state which is a plus. No return of sensation and still have overwhelming fatigue sometimes, but some days are good so hang in there.
Wow that's a lot of information, thank you everyone. My symptoms started in January, went to Dr. with a high fever and could hardly walk, Dr. says yea aches and pains come with fever/cold, get some rest... sigh. Had some slight numbness after that but in May my kegs lost sensation below the knee, that's when Dr. sent me to a neurologist, got my diagnosis a couple weeks ago, and numbness is creeping. Should hear next week when I start IVIG. AT home is good for me, will do it at my moms with home health nurse and my dad is in the medical profession as well. Thanks again for all your knowledge, it helps to hear know there are others out there and I'm not crazy :)
Nerves are curious things and you could send yourself nutz trying to understand the why's and wherefore's however doing basic research is a good (and often frustrating) pastime.
I recommend anyone doing internet searches to BEWARE of what you might find with the typical Google or Bing search. To look at the (mostly) real science you should use Google Scholar at http://scholar.google.com/. The main problem you will find is that many articles are in "pay for view" journals - but stick with it and follow leads.
It helps me sometimes while doing research to search with the term “evidence based” treatment, for example. That returns mostly only those studies that have passed strict scientific criteria like double blind studies, and reproducibility. That leaves out out all the quackery and testimonials which are of interest but of no clinic value.
I've been talking to my Dr. very deeply as I hve CIDP since 2000 now, abd I m not a doctor but Understanding (and feeling) a lot about sensitivity and pain. Our body is a perfect machine (when it is ok! No defects!). There are mucless and nerves that resáą•ond to brain commands, and at the same (not exactly at the same, but along with) place in our body, there are sensitive parts that sends pain, and also sensation to the brain, and they are completely independent from each other
My suggestion would be to check out
It is the website for the GBS/CIDP Foundation. They have tons of information, like lists of specialists for CIDP, current treatments, support groups, symptoms of CIDP and what to expect if you are diagnosed with it.
Hang in there, you will get better. I did.
Ivy
I agree with Blue Topaz. The GBS/CIDP FDTN has tons of info esp. Recommendations about knowledgeable neurological “centers of excellence” . That was how I got my second opinion, definitive studies, and first nine IVIg infusions. I Haven’t seen a clinic that good since. You don’t have to do it all at once. One thing at a time at your comfortable pace. Good Luck.