I'm 21! I'm so sad to hear about you're situation but you're not alone! You're describing a situation that was really similar to mine. At my worst, I was also wheelchair-bound. I ended up hospitalized at Cleveland Clinic and it saved me. I'm not perfect today but it's been a huge recovery from where I was. It is still very frustrating at times. Especially dealing with doctors. There is such little knowledge about CIDP. My neurologist and his team call it CIDP but sometimes I feel he's not even sure of himself. My rheumatologist at Cleveland was though. I only have clear- cut evidence of it on one test with my hand strength. I play guitar and I get upset when the weakness comes back every 2 months or so when my IV/IG treatment wears off. I still get numbness and weakness in my arms, legs and feet mostly too. And I hear you about the fatigue! All of this is so frustrating when you're a student at college. I also live on my own and attend college. If you ever want to talk more feel free to email me at ■■■■■■■■■■■■■■■■■■■■■■■. It sounds like you are almost exactly where I was a couple years ago! I was so scared too. You sound like a fighter; I commend you for your strength and pro-activeness!
One of the frustrating things about CIDP is that it seems to be different for everyone, and there is a lot of confusion about how to diagnose it. I have read that "most, but not all, people with CIDP lose their reflexes." So, you may be in the small group that have CIDP, but did not lose their reflexes.
I think what will really be telling is the response to treatment. If you get IVIG, and start to improve, I think that will be very strong evidence that you actually have CIDP.
Hang in there, and keep fighting!
Bill
Amie said:
Thank you all again for your help and advice. Just as an update I decided to go to the emergency room because my hands were getting worse and I was in a lot of pain and they admitted me to the hospital and kept me for 24 hours. I saw a neurologist who really listened to me and was interested in my case. He was honest and said he didn't know what is causing my symptoms but he is going to do everything he can to help me find an answer and treatment. I asked him if it could be CIDP and he said no because I still have reflexes. Is this correct or can you have CIDP and still have reflexes in your legs? I still really think it could be CIDP. He is sending me to a doctor at Mayo clinic in Rochester ASAP who is an expert in this area of neurology. He does think it is autoimmune because my ANA on my blood tests keep coming back high. He also said it is probably autoimmune because he found my pupils are really big and do not constrict as much as they should. I found this rather strange but interesting. At Mayo they are going to do a QSAR test and Somatosensory Evoked Potential Test which should show what is going on. Hopefully I will have a diagnosis soon and start treatment and hopefully get out of my wheelchair. This new doctor has given me hope.
My first neurologist was stuck on the reflexes aspect too! It took me getting really bad first and then showing chronic symptoms of polyneuropathy before my neurologist now (a new one) finally describes it as CIDP. I had the hardest time with it not showing up on tests but my rheumatologist in Cleveland said that for 10% of the population it won't show up on our current testing methods, at least not before it gets really bad. And, he said that the majority of this 10% population is young people. My neurologist also said that it's common for CIDP to not show up on tests and that it's a problem the medical community is working on - finding better diagnostic measures. I hope you find some answers with these tests but don't feel discouraged if you don't! I wish you the best at the Mayo Clinic, the Cleveland Clinic was a life-saver for me!
I thought I would post another update. I wish I could say I was doing better but I'm getting worse quickly. The Neurologist I saw in the hospital last week gave me his cell phone number and said I can call him at any time of day and to keep him updated. I really hope I can get into Mayo Clinic this week or they may have to take me there in an air ambulance. I'm getting so weak I can barely get out of bed. I just feel so exhausted and sleep doesn't help at all. If I get out of bed I have to have someone lift me back in because my arms are too weak to transfer out of my wheelchair. The nerve pain is getting worse too and I'm starting to have it all over my body instead of just my legs and hands and my medication only helps a little. I would go back to the hospital but there's really not much they can do for me at this point until I go to Mayo but at least I am staying in touch with the Neurologist. I will call Mayo tomorrow and hopefully they got my doctors referral and records and they can get me in quickly. Despite feeling bad I am trying to keep a positive attitude. I have hope that Mayo will finally give me a diagnosis and start treatment.
If for some reason they are stumped at the Mayo Clinic, Dr. Steven J. Spalding is an excellent resource at Cleveland Clinic. He's a pediatric doctor but he's very knowledgeable about neuropathies in young people. Maybe your doctors could reach out to him. I saw him when I was 19 even though I was "technically" an adult but he looked at me like he'd seen my type of case a thousand times before. He's the most incredible doctor I've had. Your case sounds so similar to mine! I really hope it works out for you at the clinic. I'll keep you in my thoughts!
I just spent the past 3 weeks undergoing various tests at the Mayo Clinic for my CIDP because they believe I have something in addition to just that. I also still have "some" reflexes, they seem to come and go, some doctors find them and others don't. I believe that they just work when they want to, just like my strength and stamina. Some days are better than others as you will hear from those on this site. While at the Mayo I have undergone a number of unique tests, I will visit again this Tuesday with the Neurologist down there to find out all the results. I suffered through a 3+hr EMG, a 2+hr Sweat test, Sensory test, Autonomic test, Bone Scan, Bone marrow Biopsy, Spinal Tap, Eye exam, Diabetic Consult, Other invasive tests I do not care to discuss.....all in the hopes of finding answers....for ALL of us. When I was first diagnosed I was told it takes on average 8 months, because it takes that long to rule out other causes. From what I understand there is no "definitive" test for CIDP. I responded well at first to IvIG but as of late it does not offer much, they are now talking about putting me on Cellcet in addition to my infusions if nothing else is found.
I can relate to the fatigue that you are suffering from, I get so tired of being tired.
Hi Amie, I'm so glad you're keeping us updated. I know how scary this all is but just know that we're all here for you. I'm praying that you are able to get in to the Mayo Clinic this week so you can get some answers and hopefully start treatment. I wish there was more I could do for you but since I'm in California I'm just too far away! Stay strong Amie!
I am go glad that you are at the Mayo Clinic. I went there and was totally impressed. I take Cellcept. I am on a very large dose. I have been since going there 3 years ago. I went from being paralyzed to walking with braces and a cane. The Cellcept and SoluMedrol infusions helped me significantly. Keep in touch.
As stated some time back, my neurologist told me this disease requires a diagnosis of exclusion. Unfortunately, there are not just a few simple tests. The doctors do a lot of tests to rule out other diseases. Once we suffer through all these tests hoping to find a simple answer with a simple solution, those of us with CIDP learn the news. My first few infusions of IVIG did nothing for me. What I did not realize at the time was that I will probably never return to my "pre-CIDP" health. But after 28 months of IVIG I have not worsened. And for that I am truly thankful. I can still walk, swim and even work. But, I get tired very easily. And, have very little strength in my legs.
I have only posted this in hopes that if others read it and get no response from their first doses of IVIG they won't give up.My doctor encouraged me to stay with it and I am so glad I did. The other reason I have posted this is to not give up on finding the right medical care. I only saw 2 docs prior to finding the one who made the diagnosis. And, don't think your doctor is dumb. But, make sure you are seeing a qualified specialist. mike
Spelcheker said:
Hi Amie,
I just spent the past 3 weeks undergoing various tests at the Mayo Clinic for my CIDP because they believe I have something in addition to just that. I also still have "some" reflexes, they seem to come and go, some doctors find them and others don't. I believe that they just work when they want to, just like my strength and stamina. Some days are better than others as you will hear from those on this site. While at the Mayo I have undergone a number of unique tests, I will visit again this Tuesday with the Neurologist down there to find out all the results. I suffered through a 3+hr EMG, a 2+hr Sweat test, Sensory test, Autonomic test, Bone Scan, Bone marrow Biopsy, Spinal Tap, Eye exam, Diabetic Consult, Other invasive tests I do not care to discuss.....all in the hopes of finding answers....for ALL of us. When I was first diagnosed I was told it takes on average 8 months, because it takes that long to rule out other causes. From what I understand there is no "definitive" test for CIDP. I responded well at first to IvIG but as of late it does not offer much, they are now talking about putting me on Cellcet in addition to my infusions if nothing else is found.
I can relate to the fatigue that you are suffering from, I get so tired of being tired.
I had to see 4 doctors till I found one that knew what he was doing. I had no weakness none at all, at the start just twitching in my right leg that was about a year about. Usually a EMG is done and a spinal tap that’s what finally got my doctor to look at CIDP all my blood work can back fine. It is really important that you find a doctor that has treated CIDP. Don’t put this off do as much as you can to find someone you trust and knows what they are doing. CIDP effects every one different so it is hard to nail down but once it is and you get treatment I usually gets a lot better.
It has take a year to find a treatment that works for me I am on IVIG every 5 weeks, prednisone 30 mg a day and cellcept 3000mg a day.
Good luck, I know this sucks so much but there is help out there you just have to find it. If things get worse call on of the centers of excellent and have them see you they know what is going on with CIDP.