Hi Everyone, my symptoms have progressed so quickly in the last five months that I am truly terrified. What scares me the most is that I am still going from doctor to doctor to try to get diagnosed even though I know I have CIDP. I knew it three months ago when I read about it. My internist/cardiologist, who has treated me for years as my GP, diagnosed me with CIDP but cannot treat me for it. I am seeing an expert in MS so we could rule it out. I have had 3 MRIs which have shown no lesions; a lumbar puncture which came back with normal protein levels; an EMG of upper and lower extremities which showed asymmetric severe sensory nerve damage and moderate motor damage. I have absolutely no reflexes in my knees or ankles. My symptoms began with tingling and numbness in my right big toe and my left index finger. Believe I had isolated symptoms going back at least 2 years ago when at the dog park, I tried to run, my legs froze and I fell on my face. Currently, my right hand and arm are completely numb and I must use two hands to pick up anything. I can no longer write with a pen and I am using a cane to walk. During the holiday week was the first time I fell…twice. Lately, my right eye seems to be pulling in toward my nose and I see double when that happens. I feel like there’s an octopus wrapped around my left hip hitting my back with a hammer. I am on FIRE all the time despite taking Cymbalta. I have Crohns Disease as well, so I have stomach pain and can’t eat much. Not trying to out-pain anyone, just trying to let you know you are not alone. Also trying to put out there how quickly I am progressing while the drs take their time. Any advice on how to move things along so I can start treatment BEFORE I am in a wheel chair? How did many of you get diagnosed? did you had to have a nerve biopsy? Did each doctor want to keep redoing the EMG tests? I live on LI, in New York. Does anyone know any doctors here or in Manhattan who are experienced with CIDP? My husband and I are losing hope. All we do is hold each other and cry. My heart breaks for all of you who are going through this terrible disease. There is no mercy.
Hi Jen, thanks so much for writing to me. I found the name of a doctor in NY who seems pretty involved with the GBS/CIDP and the Neurology foundation. I can’t believe it’s this difficult to get diagnosed. What I want to know, if you don’t mind sharing with me are, these questions: what type of doctor diagnosed you? What test or tests showed that you had CIDP? Did you have a nerve biopsy? At what point did dr say " these test results came back and I believe you have CIDP"? Did you have any bad side effects from the IVIG? Thanks so much for your kind words. None of us is any worse off than the other. Being sick controls our lives in a sense. Right now, I am just so frustrated because I need to get diagnosed and get treatment because i feel like I get worse every day. Jo
Jen said:
When I was diagnosed the treatment recommended was IVIG, which after a “fight” with the insurance people, I finally had the first treatment. My symptoms aren’t as far along an yours, but I believe it has helped, and am getting ready for another treatment. Having the Crohn’s in addition to the CIDP must make things so difficult for you, but I would inquire as to the treatments that are recommended. Call the AMA and find a doctor in your area who is knows more about the disease. Wishing you all the best as you seek further help!
Doggymama said:
Hi Jen, thanks so much for writing to me. I found the name of a doctor in NY who seems pretty involved with the GBS/CIDP and the Neurology foundation. I can't believe it's this difficult to get diagnosed. What I want to know, if you don't mind sharing with me are, these questions: what type of doctor diagnosed you? What test or tests showed that you had CIDP? Did you have a nerve biopsy? At what point did dr say " these test results came back and I believe you have CIDP"? Did you have any bad side effects from the IVIG? Thanks so much for your kind words. None of us is any worse off than the other. Being sick controls our lives in a sense. Right now, I am just so frustrated because I need to get diagnosed and get treatment because i feel like I get worse every day. Jo
Jen said:When I was diagnosed the treatment recommended was IVIG, which after a "fight" with the insurance people, I finally had the first treatment. My symptoms aren't as far along an yours, but I believe it has helped, and am getting ready for another treatment. Having the Crohn's in addition to the CIDP must make things so difficult for you, but I would inquire as to the treatments that are recommended. Call the AMA and find a doctor in your area who is knows more about the disease. Wishing you all the best as you seek further help!
Hi Jo!
First saw my primary care person who sent me to a neurologist. Following electric shock testing, and a lumbar puncture, I was diagnosed. IVIG was recommended right away, and I had the first treatment consisting of 3 days of infusions. The first day had the flu like symptoms and headache, next two days were not as bad. About a month later, mid-Dec. I had an allergic reaction.......eczema.......which I think was triggered by the treatment but don't know for sure. Finally that's under control. Hope you find someone who will get you into treatment! Hang in there........send a message if you want to chat...........Jen
Hi Jen, I am not sure what you mean about “chat”? Do you mean chat like this or is there a way to chat back and forth like AIM? I wanted to ask you what they found in your EMG and spinal tap that told them you had CIDP? Were your protein levels in spinal fluid high? I am seeing a new doctor and she wants me to have the EMG (electric shock testing) all over again. As you know, it does not feel good! Also, you said that my symptoms seem more advanced…can I ask what your symptoms are? Do you have numbness and burning in both feet and hands/arms? What symptoms did you have when you went to your primary? Jo
Jen said:
Hi Jo!
First saw my primary care person who sent me to a neurologist. Following electric shock testing, and a lumbar puncture, I was diagnosed. IVIG was recommended right away, and I had the first treatment consisting of 3 days of infusions. The first day had the flu like symptoms and headache, next two days were not as bad. About a month later, mid-Dec. I had an allergic reaction…eczema…which I think was triggered by the treatment but don’t know for sure. Finally that’s under control. Hope you find someone who will get you into treatment! Hang in there…send a message if you want to chat…Jen
Doggymama said:
Hi Jen, I am not sure what you mean about "chat"? Do you mean chat like this or is there a way to chat back and forth like AIM? I wanted to ask you what they found in your EMG and spinal tap that told them you had CIDP? Were your protein levels in spinal fluid high? I am seeing a new doctor and she wants me to have the EMG (electric shock testing) all over again. As you know, it does not feel good! Also, you said that my symptoms seem more advanced...can I ask what your symptoms are? Do you have numbness and burning in both feet and hands/arms? What symptoms did you have when you went to your primary? Jo
Jen said:Hi Jo!
First saw my primary care person who sent me to a neurologist. Following electric shock testing, and a lumbar puncture, I was diagnosed. IVIG was recommended right away, and I had the first treatment consisting of 3 days of infusions. The first day had the flu like symptoms and headache, next two days were not as bad. About a month later, mid-Dec. I had an allergic reaction.......eczema.......which I think was triggered by the treatment but don't know for sure. Finally that's under control. Hope you find someone who will get you into treatment! Hang in there........send a message if you want to chat...........Jen
Hi Jo!
Chat wasn't the right word........more like talking back and forth here. My symptoms............tripping going up stairs, walking on feet that felt like 2 wooden blocks, toes totally numb........if something pricked my toes, couldn't feel it at all.......pedicures were a strange sensation, stiff fingers which are arthritic but hurt..........not good when you play the piano, and occasionally off balance. The EMG test was not fun as she said she never had to go so high to get a reaction. My protein level was up in the lumbar puncture by one point, but I was told it was CIDP even one point over the "line". After the treatments, my feet are better as they don't feel so wooden now, and my fingers don't ache constantly. Still off balance occasionally and still have "lightning"pains in my feet and aches that come and go. They are waiting for me to let them know when I feel as though I am backsliding to have the next set of infusions. Certainly isn't what I thought my older age was going to be like. If the new tests will lead you to treatment more quickly, maybe that would be good..........even as bad as they are to go through. Sure hope you have a doctor that will get you properly squared away and into treatment!
Jen
hi Jen, thanks for being so specific. What you descrine feels exactly like whay I feel. The wooden feet! i say they feel like they have turned to stone. Oh I hate this so mich and I’m so sorry you are going through this. You mentioned your age so i am wondering how old you are. i am 47, married, two furry dog children and libe on suffolk county, New York. Thank God I was already on disability so i don’t have to worry about trying to work, which would be impossible. you have really helped me and I appreiciate it. I would love to keep chatting. Jo
HI Jo,
Glad I could help. You are so young to be beset with this. I am 74 now and retired, with my 3 cats.......Stanley and Louise who are 2 and Natasha who is 6. Am living near Syracuse. I have a nephew and family nearby but they are busy with their own lives, and although I can call anytime, I hesitate to do that much. My brothers and sisters-in-law are all further away, one in state, one in Florida. Having your husband there to help you through the rougher times is a blessing for you! Let me know what you decide and how things are going for you!
Jen
It all sounds pretty scary. I was diagnosed in 1998. Before that, I had 2 EMGs, a sural nerve biopsy, a lumbar puncture, and various blood tests. I was initially seen by a neurologist that was more of a generalist. He sent me to Boston to a specialist who diagnosed me in 15 minutes. I have been on monthly IVIG ever since. I have minimal symptoms. I did have an acute episode in 2000 that I attributed to some oral prednisone that I was given for poison ivy. The "normal" taper off of prednisone didn't work for me and my neuropathies got so bad that I was falling down, using a cane and close to being in a wheel chair. The IVIG really works for me. NYC should be a great place for finding good care. I did a Google search and came up with two neurologists that specialize in CIDP. Here are the links:
http://web.neuro.columbia.edu/members/profiles.php?id=193
http://www.hss.edu/physicians_lange-dale.asp
There are many variants of CIDP. I can say that in my case IVIG works very well. Personally, I don't think you'll need any more EMGs. Just make sure that if you see a new doctor that you provide all your test results.
Best wishes and take care of yourself.
Evan
First of all, you need to find a good neurologist, who is experienced with CIDP, if you have not already. It is relatively rare, and many doctors have never even heard of it. It is a hard thing to diagnose, because everyone seems to respond somewhat differently.
My neurologist told me that there are three criteria for diagnosing CIDP, and that I had to meet all three for him to be sure that it was really CIDP:
1. Symmetrical weakness that lasts at least 8 weeks.
2. A particular response to EMG testing (sorry, I cannot tell you what that is, but a good neurologist will know)
3. Elevated proteins in spinal fluid.
I had the first two, and my neurologist told me he was 75% sure it was CIDP, but he wanted to do a spinal tap to be sure. It came back very elevated, so he was positive it was CIDP.
He did a first round of IVIG, which really helped, got me back on my feet. After that, he tried me on prednisone to prevent a recurrence. The prednisone was not effective for me, and I would up back in the hospital in a few weeks. So, I am now on a regular schedule of IVIG every few weeks. He is also trying Imuran, which is an immune suppressant, but it appears to be having a bad effect on my platelet count, so don't know if I will be able to continue that.
I work in a clinic with 25 doctors and only 2 of them had ever heard of CIDP! After 6 months of symptoms & many tests, I was sent to a fantastic neurologist who diagnosed me that same day after doing EMG & NCS - she also sent me for LP which showed elevated protein levels, confirming the diagnosis. I began IVIG 3 weeks later & noticed improvement in a week! I have since had 2 more 5-day sessions of IVIG and will be going for another round in February. My life feels 95% back to normal!! I live in Alberta (Canada) so cannot recommend a good doc for you (I wish I could send you mine!). Good luck and I hope you have the same positive response I've had!!
Thanks for writing Uncle Bill. I have read so much about this stuff. All different types of neuropathy. My first neuro after EMG of upper and lower told me I had peripheral neuropathy and that the next step was to find out what was causing it. He said CIDP was out because my nerve damage is asymmetrical. however, over the last 30 years since those parameters were written, researchers have found that 8 percent of CIDP sufferers have asymmetrical damage. I did not have elevated proteins In my spinal fluid but some other number was off so that concerns me…that my protein wasnt high. I am having another EMG with this new dr on friday so i am going to see what she says after. If I still don’t have any answers, i am going into the city to see dR. Lange, who evan posted about above. Thanks so much for your story. maybe I don’t have CIDP but as sure as hell hope they find out what I do have because i am already using a cane tonwalk. Next stop is wheels and I DO NOT wanna go there!
Uncle Bill said:
First of all, you need to find a good neurologist, who is experienced with CIDP, if you have not already. It is relatively rare, and many doctors have never even heard of it. It is a hard thing to diagnose, because everyone seems to respond somewhat differently.
My neurologist told me that there are three criteria for diagnosing CIDP, and that I had to meet all three for him to be sure that it was really CIDP:
1. Symmetrical weakness that lasts at least 8 weeks.
2. A particular response to EMG testing (sorry, I cannot tell you what that is, but a good neurologist will know)
3. Elevated proteins in spinal fluid.
I had the first two, and my neurologist told me he was 75% sure it was CIDP, but he wanted to do a spinal tap to be sure. It came back very elevated, so he was positive it was CIDP.
He did a first round of IVIG, which really helped, got me back on my feet. After that, he tried me on prednisone to prevent a recurrence. The prednisone was not effective for me, and I would up back in the hospital in a few weeks. So, I am now on a regular schedule of IVIG every few weeks. He is also trying Imuran, which is an immune suppressant, but it appears to be having a bad effect on my platelet count, so don’t know if I will be able to continue that.
Hi lorie, thanks so much for telling me your story. You all seem to have a majore common theme: pexcess protein in the spinal fluid. I am not sure if some CIDP cases can come up with good protein levels but mine did. i am going to have to research that. i am thinking they may do a nerve biopsy also. Thanks for the info. I know that you will keep having great results with IVIg. Also read that they are researching stem cell treatments for use in CIDP. Maybe one day soon, we all get a little shot of new cells and we can be like normal people again!!! Best, Jo
Lorie said:
I work in a clinic with 25 doctors and only 2 of them had ever heard of CIDP! After 6 months of symptoms & many tests, I was sent to a fantastic neurologist who diagnosed me that same day after doing EMG & NCS - she also sent me for LP which showed elevated protein levels, confirming the diagnosis. I began IVIG 3 weeks later & noticed improvement in a week! I have since had 2 more 5-day sessions of IVIG and will be going for another round in February. My life feels 95% back to normal!! I live in Alberta (Canada) so cannot recommend a good doc for you (I wish I could send you mine!). Good luck and I hope you have the same positive response I’ve had!!
Hi Jen, I dont this this horrid illness cares how old you are. I’ve seen. Juvinille section on this site so little kids must get it too. How horrible ro not be able to run and play. My entire family was always overweight so I always tried to eat better and exercise so I wouldnt get diabetes or heart disease. None of it really mattered. First I fo Crohns, then whatever this turns out to be. It makes me so muxh less scared to talk. To people who have the same symptoms and fears that I have. i guess you dont have any human kids? Me either. i have my husbad Jim, who is the light of my life, and my babies, a husky named Dakota and a Rescued pit bull named Willow.yes, I thank god every single day for Jim and his parents. my own parents are both gone and his parents live in Las Vegas. They are putting off their trip back home until I get a diagnosis. I sont know how you manage alone, especially in the cold and snow. What job did you retire from? Will LOL if you say teacher because that’s what I was! Pls keep writing. I so enjoy your “voice”. Jo
Jen said:
HI Jo,
Glad I could help. You are so young to be beset with this. I am 74 now and retired, with my 3 cats…Stanley and Louise who are 2 and Natasha who is 6. Am living near Syracuse. I have a nephew and family nearby but they are busy with their own lives, and although I can call anytime, I hesitate to do that much. My brothers and sisters-in-law are all further away, one in state, one in Florida. Having your husband there to help you through the rougher times is a blessing for you! Let me know what you decide and how things are going for you!
Jen
Evan, thanks so much for writing to me and for taking the time to do research. I have been doing my own as well and DR. Lange, whom you also found, from Hospital of Special Surgeries I think is THE guy to see in NY. I called his office and I am waiting for a call back. I feel like I am just spinning my wheels out here in Long Island and should try to get in to see the best. Will post updates. Jo
Evan B. said:
It all sounds pretty scary. I was diagnosed in 1998. Before that, I had 2 EMGs, a sural nerve biopsy, a lumbar puncture, and various blood tests. I was initially seen by a neurologist that was more of a generalist. He sent me to Boston to a specialist who diagnosed me in 15 minutes. I have been on monthly IVIG ever since. I have minimal symptoms. I did have an acute episode in 2000 that I attributed to some oral prednisone that I was given for poison ivy. The “normal” taper off of prednisone didn’t work for me and my neuropathies got so bad that I was falling down, using a cane and close to being in a wheel chair. The IVIG really works for me. NYC should be a great place for finding good care. I did a Google search and came up with two neurologists that specialize in CIDP. Here are the links:
http://web.neuro.columbia.edu/members/profiles.php?id=193
http://www.hss.edu/physicians_lange-dale.asp
There are many variants of CIDP. I can say that in my case IVIG works very well. Personally, I don’t think you’ll need any more EMGs. Just make sure that if you see a new doctor that you provide all your test results.
Best wishes and take care of yourself.
Evan
Hi Jo!
Begin the LOL.......I was a teacher for 33 years. Kindergarten. Loved the kids but not all the hoops the State Ed dept. has everyone jumping through. What did you teach? Both my brothers and one of my sisters-in-law taught also.
Only my furry kids and a long line of those! Many nieces and nephews and their kids who I really enjoy.
Hope Friday goes well for you........please let me know what transpires.
Meanwhile, in the words of a dear friend who used to live in Oklahoma, keep on truckin'!
Jen
Hi Jen, thanks for the biggest smile in a while! Knew you were a teacher! I just knew we were “kindred spirits” in the words of Anne of Green Gables. I taught 7th and 8th grade english. Tough grade, but adored the kids. My last class is in their early thirties and having kids. I had to leave because of health issues. I knew from the first day it was where I belonged, but then again since I had to leave…maybe not. I eid some computer work at home for years until I had to give that up too. Then I was helping a friend with his animal rescue…and you guessed it…had to give that up too. The last dog I placed was a beautiful red pit bull named Bronx who was going to be put down. She is happy and very much loved and loving her new family. Such an awesome feeling! If I have any kitties that need a temporary home, I will know who to call!!! I feel that I cannot get along with people who dont care about animals. Republican/democrat, different race, religion, I am open to most of it…but MUST LOVE ANIMALS!! I dont know whay I am doing about Fri EMG. I just faxed all my records to a specialist in Manhattan. If he will see me soon, I will cancel Fri. Keep you updated. Are you on facebook? If so, friend me and we can see each other’s furry babies…joann caruso vulpi medford NY. Jo
Jen said:
Hi Jo!
Begin the LOL…I was a teacher for 33 years. Kindergarten. Loved the kids but not all the hoops the State Ed dept. has everyone jumping through. What did you teach? Both my brothers and one of my sisters-in-law taught also.
Only my furry kids and a long line of those! Many nieces and nephews and their kids who I really enjoy.
Hope Friday goes well for you…please let me know what transpires.
Meanwhile, in the words of a dear friend who used to live in Oklahoma, keep on truckin’!
Jen
Hi Doggymama,
My neurologist, Dr. Norman Latov, is recognized as an expert on CIDP. He has about 30 publications on CIDP. (If you go to the PubMed website (http://www.ncbi.nlm.nih.gov/pubmed/) and enter "CIDP" and "Latov" into the search engine, you will get about 30 hits.) He is a full professor of neurology at Cornell Weill Medical School in Manhattan. Luckily for me, is a preferred provider under my insurance plan.
However, I have the impression that has very strict criteria for diagnosing CIDP. I believe he uses research criteria, being a researcher himself. I've been seeing him for about five years and haven't been diagnosed with CIDP yet. However, my case is atypical. My primary problem is common variable immunodeficiency and controlling that takes precedence over many of my other medical problems. I believe that the IVIG that I'm taking for my immune deficiency reduces my neuropathy, making it difficult to diagnose. Unfortunately, many of the treatments for CIDP are not appropriate for people with my immune deficiency.
One thing that Dr. Latov did which you haven't mentioned in your messages is to test for nerve autoantibodies in blood samples. This might be important for your diagnosis.
There's another neurologist in NYC who's been recommended to me, but I don't know him personally. His name is David Younger and he is at NYU Medical Center. He may be more liberal in his diagnostic criteria for CIDP.
Jon J
Thanks so much Jon. That is what I am afraid of, that I won’t get the diagnosis I need to get the IVIg.I actually came across Dr. latov in my research but I sent some files today to a Dr. Lange in NYC. i am waiting to hear from him. I will definitely keep Dr. latov in mind. I think that is the vlood results I am waiting for. I will keep you posted. I never heard of your immune illness but will look it up and write more once I know what I am talking about. I hope you have a good tomorrow. All we can hope for right? Jo
JonJ said:
Hi Doggymama,
My neurologist, Dr. Norman Latov, is recognized as an expert on CIDP. He has about 30 publications on CIDP. (If you go to the PubMed website (http://www.ncbi.nlm.nih.gov/pubmed/) and enter “CIDP” and “Latov” into the search engine, you will get about 30 hits.) He is a full professor of neurology at Cornell Weill Medical School in Manhattan. Luckily for me, is a preferred provider under my insurance plan.
However, I have the impression that has very strict criteria for diagnosing CIDP. I believe he uses research criteria, being a researcher himself. I’ve been seeing him for about five years and haven’t been diagnosed with CIDP yet. However, my case is atypical. My primary problem is common variable immunodeficiency and controlling that takes precedence over many of my other medical problems. I believe that the IVIG that I’m taking for my immune deficiency reduces my neuropathy, making it difficult to diagnose. Unfortunately, many of the treatments for CIDP are not appropriate for people with my immune deficiency.
One thing that Dr. Latov did which you haven’t mentioned in your messages is to test for nerve autoantibodies in blood samples. This might be important for your diagnosis.
There’s another neurologist in NYC who’s been recommended to me, but I don’t know him personally. His name is David Younger and he is at NYU Medical Center. He may be more liberal in his diagnostic criteria for CIDP.
Jon J