So right now I have one Nuero who says I have CIDP after a EMG and 19 blood test. I have a 2nd Nuero that says it may be CIDP but there are lots of other things that can look like CIDP and CIDP is uselly more aggesive then this.
This all started with muscles twitching all most a year ago. It has been slow moving but it is getting worse. It started with twitching and for the past 4 weeks I have had pins and needle feeling in both sides of my body not really bad but I can feel it and it comes and goes. For the past 2 weeks my legs have not been recovering from my work out like normal and some time they shack after a hard work out. I am on prednisone 20 mg since 11-3-11 and it was upped to 40mg on 1-11-11. I have good days and bad days but it seems like the bad are becoming more common.
My question is my 1st nuero wants to start IVIG and its 7k out of pocket for me but that’s it for the year. I am thinking about just doing it just so I know. If IVIG works I know its CIDP if not then maybe its BFS or something else. Plus I can get all the test I need at no more cost. I can wait for the 2nd nuero and the MRI to see what that shows and see what he says but I am scared that if I wait too long I will get nerve damage.
What would you do?
Did the md do a lumbar puncture? IVIG is a potent medication with some serious side effects.
After seeing my neuro for the first time, he told me he believes I had CIDP after seeing my EMG results. He ordered a lot of blood tests and a full body bone scan, my guess is to rule out other things. He told me that I have CIDP and that we can either start treatment right away, or do the wait and see approach. He told me that the medicine's are very strong and have some serious side effects and it was ultimately my call. He did say however, that before starting treatment, we would have to do a lumbar puncture. Right now I am going to go see another neuro next month to get a second opinion. I have been have symptoms for 3.5 years now, but it took me 2.5 years to finally go to the doctor about it. I guess to answer your question, I am waiting to get a second opinion prior to starting treatment.
Do the lumbar puncture first. In most cases, the EMG and puncture will tell the story. You’ve waited this long and the puncture is way less dollars than IVig.
Ok, I will ask the 2nd nuero for a lumbar puncture before I start treatment on IVIG and see if I can get him to do a EMG of my left side also since right now I only have my right.
Just so I make sure I understand with both a emg and lumbar puncture you can get a pretty good picture if its CIDP or not correct?
That is my experience. The EMG will show all the nerve breakdowns (simply said) and the puncture will show protein levels in the fluid. I was super lucky that my very first neuro visit was a "success" in that he pretty much said I had GBS (eventually I went to the CIDP diagnosis) and put me in the hospital for EMG/puncture and then IVig treatment. My symptoms were gradual too and I got worse over six months. We decided against any steroids as, yes they work, but it is tough to then determine if one is getting better or just steroid use. So, for a year now, I have had two IVig treatments per month and blessed that I am getting better/stronger. From wheelchair Dec 2010 to now using walker more and more. Time, patience and an awesome neurologist are the keys. I started a blog (although a complete loser in updating it)...www.cheryl-mycurrentjourney.blogspot.com
Hi Jast, none of us are doctors and may make your head spin because we can only offer our differing experiences. Some people are dx through lumbar puncture when the proteins in their spinal fluid are high. Mine were not. I had one EMG from one dr who told me I did not have CIDP. When I insisted, he did a lumbar puncture and when they came back normal, he said “I told you didn’t have CIDP”. But my symptoms, right down to bowel problems, fit so perfectly, I knew I had it. i went to a different Neuro, one who had a great reputation and saw only CIDP patients. She spent 2 minutes doing EMG, the shock part, and said, you have CIDP. i can see very clearly on the test that you have demylination to the nerves. So it seems that many drs will not really know how to dx this illness. Make sure that oneof your drs does know how. Ask questions: how many CIDP patients have you had? Did they all present the same way? Have you seen any variants of the disease that present like mine? How many of your patients are currently on IVIg treatments? How many years have you been prescribing IVIg? My dr has been prescribing IVIg for over 20 years and currently has 40 patients onit. This is a dr with experience in this area and that is what you need. We each have only seen our own case. Qjestio your drs and see who has the experience and go with his/her opinion. If neither has enough experience, research online and see who does. You can also put your dr’s name in www.healthgrades.com and see what they list as their specialty. That is my hard learned advice. Jo
I am currently going through what you and Jo are going thru. I've had blood tests, emg and also a puncture and all have come back negative for CIPD or anything else for that matter, except the emg showed carpal and tarsal tunnel like results.
My neuro would not treat with IVig unless the spinal puncture came back positive for CIPD. Your Dr is right that a lot of things to mimic CIDP or visa versa and it is so frustrating! The puncture is important to rule out proteins, or viruses that don't show up in the blood tests. MRI rules out MS or other types of abnormalities of the brain or spine.
The list goes on and on for possibilities, I have been told that Lupus, Fibromayalgia, Lyme Disease, all of which can "hide" from blood, MRI and spinal puncture tests.
IVig does have serious side effects. I was tempted to just try to find a DR to prescribe it, but I am holding off. I am also doing physical therapy and adding supplements and have shown some improvement. However, I am not relying on that. I am also continuing to seek every specialist that fits the bill.
I have relatively mild symptoms compared to others here, mostly just numbness, tingling, migraines and some twitching, ocassionally sharp shooting pains. The symptoms started a year ago after a miscarriage and came and went for a few months and until recently, were 24/7. I seem to have relapses now, so it comes and goes in a period of months.
Jo is right, you have to be your own advocate and find a Dr that knows what he is doing.
A third opinion could be another option. It took me three to get it right. I did not have elevated protein in my CSF and had 50 other lab test Ant M,A,G, MRI, EmGs, etc. All three said CIDP but…
First Dr treated with Pred and said it wouldn’t come back. I know you are all laughing at that one. 2nd doc used IVIg but said I could wait as long as I wanted to get next treatment. Didn’t tell me of the risk of nerve damage and how sick I would be. 3rd is a charm. It has been a real partnership from the start. She did want to repeat a lot of tests to be sure but it was well worth it. It still takes trial and error but we make decisions about my treatment plan together.
Mash, What is Ant M, A, G? What did you and your 3rd Dr decide to do as course of treatment, just curious?
They are Anti M,G A antibodies. To see if they were elevated or vice versa, which can effects on your immune system. We decided to do IVIg but have been through other options because of aseptic meningitis from IG. Tried plasma, Pred, Imuran,Cellcept, and now on Rituxan. So now will take Rituxan every 6-9 months to help stretch out IVIG intervals. Still contemplating SCT from Northwestern Univ.
Thanks guys for all the help. It seems like having problems finding a good doctor is a common one we all sheared at some point. I don't want to jinx myself but my problems have not really been that bad. I would not even be worried if it was not for my first Nuero telling me I have CIDP.
If it is CIDP I want to start working on it ASAP so I don’t get as bad as all the stories I read if possible. If it’s not I want to know if it is something I really need to worry about.
So the MRI came back and looks good there is nothing on it that would cause what the EMG shows. The 2nd nuero says to start IVIG ASAP.
So since this is going to be my first time getting the drug any pointers would be great.
Yay! I know how relieved you feel finally starting treatment. I just had my first 5 days of treatment. Everything was fine until day five. I don’t want to scare you & everyone is different but I wish I were better prepared. On day five, I started to get a headache and it got really bad. I was nauseous and vomitted. It lasted friday night to saturday night. My dr said it is commom and that since I won’t be getting that big of a dose again, I should be okay. I read afterward that you should drink @ least seven glasses of water aday in the week before treatment. I think that’s so the IV is easier to put in. Make sure they give you benedryl & tylenol before. If I had known, I would have at least taken 2 tylenol six hours after the first dose to keep the headache at bay. Also, only give them one chance to get IV in. If they dont get it in one shot, ask for someone else. I’m sure you’ll be fine. Good luck! Jo
A third opinion from a center of excellence would be the way to go. Do you live near one. Certainly an MRI should not take that long to get this done. Sound like the prednisone is not helping very much and has more side effects than IVIG. Prednisone is cheaper but will eventually thin your bones and cause significant facial appearance changes.
I am going to start IVIG on 2-7-12 and then every 3 weeks for awhile. I will let you guys know how it goes.
My nero has some experience with CIDP. he did the EMG himself. Felt it was CIDP based on what he saw. Lumbar puncture two days later showed my protein level was twice what it should be. That finalized the diagnosis.
Hey guys I am hanging out here getting my first IVIG. They want to do the loading in 2 days is that ok? I feel ok right now I am drinking lots of water.