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1

I am new to CIDP. I have not been diagnosed yet but my doctor thinks that I have CIDP. I have been feeling really scared and alone lately so I thought I would share my story.

I am 20 years old and in college. A year ago I started having episodes of leg weakness so bad that I could barely walk some days. Then in February 2012 the weakness got so bad one day that I could not stand a all. My legs burned like they were on fire and my hands tingled. I stayed a week in the hospital and they thought I had Gillian Barre but my EMG came back with only a slight abnormality with my left leg so they said it wasn't. The only other tests they did were an MRI of my brain and spine and blood tests. I didn't really get better but they sent me home anyways saying it was all in my head and I needed to de-stress. I tried that but I never got better. Over the next 6 months I went from doctor to doctor and they either told me it was being caused either by stress or they simply didn't know. My legs got so weak that they became completely paralyzed and I became wheelchair bound. They continued to burn terribly despite losing most feeling in them. Eventually all I could do was stay home and lay in bed all day.

Then in August they miraculously started getting better. In another month I could walk again. They were still weak but I could walk. I thought whatever it was was gone so I went back to school. Then over a few more weeks my legs started to get very weak again and I started to have trouble walking until one day in late october I could not move them at all. Since then I have been having terrible burning, stabbing pains. My lower back hurts as well. The pain radiated down my legs and sometimes up my spine like my spine is on fire. Pressure on the bottom of my feet sends shocks up my legs. Other times my legs feel like they are submerged in ice water. I am also really tired all the time.

Today I started getting weakness in my hands. In the past I have only had tingling in my hands but today I kept dropping things and I couldn't even make a fist my fingers were so weak. This is really starting to scare me. I feel like I'm going down hill really fast this time. Despite this I really want to finish this semester. It is hard enough to live by myself and be confined to a wheelchair but now that my hands are going I am afraid I won't be able to finish my classes and I only have a couple weeks left but if my hands get too bad I won't be able to do anything.

I have a doctors appointment with a new neurologist that kind of knows about CIDP in 3 weeks. I'm really afraid that this doctor won't know what to do with me like all the others I've seen and I'll just keep getting worse. I've been struggling to find an answer for a year. I found CIDP doing research and I talked to my doctor about it and he thinks it probably is but he doesn't know much about it.

I've just been feeling really alone and scared since no one has been able to help me and I'm afraid if treatment isn't started soon that things will get really bad. I just don't understand how the doctors can just send me away with "I don't know what to do with you. Sorry." and expect me to just continue with my life and not help me at all.

Has anyone else had this same type of experience with doctors? I just don't know what else to do and I feel so lost and scared. I'm stuck in a wheelchair, unable to move my legs they're so weak and in constant pain. My body feels like it betraying me and giving out and no one will help me.

2

Well I had a similar experience with my legs about seven years ago, but fortunately never have had to use a wheelchair, just a cane. Unfortunately to took seven year to diagnose and five neurologists. It's good that your neurologist recognizes his limitations and has referred you to someone who is more knowledgeable in this area, it took me seven years to get there. What I can say though is having a positive attitude is half the battle and I noticed a hard line of negativity throughout your post. CIDP is a rare disorder 1 in 100,000 persons and it affects everyone differently. Hopefully your new neurologist will be able to give you some answers and help. Look forward to your new appointment and stay positive!!! Gary

3

Amie, This is my first day on the forum; however, I don’t consider myself a “newbie” when it comes to CIPD. I have experienced many of your frustrations both physical and emotional (I freaked when I couldn’t make a decent C chord on my piano) . Tremors, weekness,nerve pain and barely walking with a cane put me into extreme depression. The GOOD NEWS is that once your treatment begins and has time to take effect, there is a very good chance that you will see very positive improvement! I hope and pray that this happens to you as it did to me. Bob C.

4

Hi Amie, I understand your frustration after having Ataxia for 9 months and walking with a cane I was sent to a Nero. The pain doctor said it was a ssri I took the Nero did nerve conduction test and said volicity for Cidp. Ok what’s that I said she explained. I am now waiting for my spinal tap results to confirm her suspicions. I have had back pain burning legs tingling and depression. My ataxia is no gone so its wait until Thursday for tap results. I have learned from the group her it effects everyone difftently with common themes. Fatuige is bad for me now…yes I understand I just want to know I will find put Thursday. Stay strong! I cry sometimes from the unknown and frustration. Either way I know it will be ok a day at a time if my mind will let me stay in the present. There are great people here and by reading their post I know I’m not just crazy…we will see :wink:

5

Hi Amie, I'm so glad that you found our website and that you shared with us your frustrations and fears. Any illness like this is scary especially when it has taken you so long to get answers. I have had CIDP for a few years but was just diagnosed in July. I have never experienced any paralysis but my feet are almost completely numb and I have burning and stabbing pains in my feet, legs and hands. Also it is very difficult and painful to walk. I started IVIG therapy last month and will start my second 5-day infusion this coming Monday but I haven't noticed any improvement. In fact my hands feel like they're getting worse. I'll do the 5-day infusion starting on Monday and then complete another one in December and then I'll go back to my neurologist in January so they can do another nerve conduction test. So all I can do is pray and hope that there is improvement.

Like I said at the beginning of my post, I'm really glad that you shared with us. It's hard for people that do not have a chronic illness to understand what we go through on a daily basis so it's important that you share with people that do understand. I have a lot of other illnesses besides the CIDP and have been regularly going to doctors for YEARS. There are good doctors and there are bad doctors and just like in any profession they can make mistakes. I understand how frustrating that must have been for your legs to basically be paralyzed and for the hospital to just send you home. Sometimes we have to be very assertive just to get our needs met and to get the answers we need. I know for me I'm not always capable of being assertive so it helps to have someone with me that can be my advocate when I'm just too ill to do it for myself. You might want to consider taking someone with you to your appointment with the new neurologist. It's always helpful to have an objective person with you that isn't as emotionally involved. It's also nice to have a second set of ears so you can make sure you don't miss anything. The other thing that I have done is to take a small tape recorder with me to certain doctor's appointments. When I'm dealing with a new illness and I know the doctor will be explaining the illness and possible treatments, it is very difficult for me to remember everything the doctor says. If you record your appointment then you can listen to it again and again so you really understand everything he said.

I don't know if any of this has helped you but I do hope you continue to come onto this site to tell us how you're doing and how your neurologist appointment went. We really do care!!!

Laurie

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Amie,

First I am so sorry that you have been through so much at such a young and innocent age. IF you have CIDP a specialist can treat you and you can regain some or most of your health. Let someone on this forum know where you live so that a CIDP specialist can be found for you. I would not continue to see a doctor who doesn't know much about CIDP. Most doctors have never heard of this disease. My very best to you. mike

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Hi Amie,

Just look at all the support you already have from this forum, so many people DO care about you! I agree with taking a recorder to appointments for future reference, just be sure to let your Dr. know you are recording the visit. When at the hospital, ask if they have a patient advocate to help you through the maze. After months of telling my family practice Dr. I was losing feeling in my legs and having him tell me to do yoga, my daughter who has MS told me to insist on a referral to a neurologist. After multiple tests I was diagnosed with CIDP and started on IVIG. This has stopped the progression and the only time I need a cane is when I become fatigued. Please keep us posted and ask for help we are all here for you. Peace Nancy p.s. I have found stress does intensify my symptoms it is a catch 22

8

Amie,

Whatever you do, never let the disease rob you of your spirit. I just spent the past two weeks at the Mayo Clinic in Rochester MN and one reoccurring comment from my providers was that they were impressed that I still have my sense of humor. When afflicted with such a debilitating disease it is difficult to keep a positive attitude, yet it is at this time when we most need it. Our bodies are failing us but our minds are still intact, our spirit can still remain strong. Focus on the positive things in your life, friends, family, etc... This disease affects each of us differently, each of us has our own unique story to share. We are happy that you found us here and we understand your frustrations....we most certainly do.

Anytime you need a sympathetic ear or a suggestion from someone who has been there done that, then you have come to the right place. You are NOT ALONE, there are many of us out here who share your same fears and frustrations, feel free to to ask for help or advice anytime from anyone on this site. We are all here for each other.

9

First thing - try to get your Neurologist appointment bumped up to urgent and/or get into their cancellation waiting list. Pre-treatment, every day can be important as the earlier you start treatment for CIDP the more chance there is of preventing more damage.

However - that said - all of us who have been through that period understand your current thought processes. The big thing to remember is that if you do have CIDP it is NOT a sentence, it just becomes one of those things that you learn to live with. Certainly, there will be things you can not do anymore but just get on with life and make the most of what you can do. You will find that you soon work and play within your usual limitations. Every so often you will push those boundaries and realise it might hurt but can't kill you and there is this challenge of what to try next.

Keep positive and read our stories here. People with just CIDP (and no other complications - because that does become complicated and I really feel for them) will tell you that we all have different start and mid points in our stories but we are all alive, controlled and making the most of it.

10

Thank you all so much for your help and support. It has really lifted my spirits to hear from all of you and know I'm not alone. I will definitely call and see if I can get an appointment any sooner. I few months ago I did go to Mayo Clinic in Phoenix, AZ but was not able to stay long enough to finish testing. I have been considering going back over Christmas break from school if this new neurologist doesn't know what to do. Is Mayo clinic a good place to go to get a diagnosis and for treatment?

11

Hi Aime,

I was diagnosed with CIDP this past March and it's still a roller coaster ride. When my Neurologist asks me "how are you doing?" I can only say "that depends on the day or the time of day." This thing strikes and there is no rhyme or reason for it. One minute I can walk and the next minute I can't get my legs to move. I'm sorry I didn't see in your post whether you've had a spinal tap yet. If not, that's very important. Your Neurologist is going to be looking for increased proteins in your cerebral spinal fluid. EMG, spinal fluid and clinical exam is about all the doctors have in order to diagnose this disorder. If you have any questions just ask .... there are a lot of experienced individuals and they and I will be more than happy to assist you in this crazy thing called CIDP. Good luck ! Keep us posted on your progress.

God bless,

Laurie

12

My legs are the same way. They change some day to day and throughout the day sometimes. Most of the time I can't really move them but sometimes I'll be able to move them just a little but then in maybe an hour or so I can't move them again. I have found this really strange and couldn't figure out why this happens so its interesting that you have the same thing with your legs. Really the only test I've had was an EMG but it was just as I was starting to have symptoms and it only showed something a little off in my left leg. They just passed it off and said I probably injured it or something but I don't think so. I didn't have a good experience with the EMG either. The needles really caused me a lot of pain and I could only tolerate one. So I'm not really looking forward to another EMG but I'll do what I have to do. I'm absolutely terrified of getting a spinal tap but I know I probably will have to. My biggest problem right now is finding a doctor who will listen instead of telling me they don't know what to do.

Laurie said:

Hi Aime,

I was diagnosed with CIDP this past March and it's still a roller coaster ride. When my Neurologist asks me "how are you doing?" I can only say "that depends on the day or the time of day." This thing strikes and there is no rhyme or reason for it. One minute I can walk and the next minute I can't get my legs to move. I'm sorry I didn't see in your post whether you've had a spinal tap yet. If not, that's very important. Your Neurologist is going to be looking for increased proteins in your cerebral spinal fluid. EMG, spinal fluid and clinical exam is about all the doctors have in order to diagnose this disorder. If you have any questions just ask .... there are a lot of experienced individuals and they and I will be more than happy to assist you in this crazy thing called CIDP. Good luck ! Keep us posted on your progress.

God bless,

Laurie

13

Hi Arnie

I can appreciate how frightening all this is. The one piece of advise I would give you is to make sure that the neurologist you are seeing truly specializes in this type of disorder. There are a number of "centers of excellence" for this specifically. You can find which ones and where there are on the GBS/CIDP website. It is www.gbs-cidp.org. Hope this is helpful.

Lynn

14

Amie, Parts of this story sounds like it was written about me. Be very careful right now. You really need to look into IvIg or another treatment. It ended up that my current Neuro believes, I have CIDP. BUT He also believes that while I was on my quest to find a DX, it went into GBS and then back to CIDP, So from cidp to gbs to cidp. This is coming from Dr. Teener at the University of Michigan Hospital in Ann Arbor, Michigan. But the first Neuro there, Dr, Selwa, misdiagnosed me. Her and another Neuro scheduled me to see a Psychiatrist to get treatment for what they believed was a "Psychosomatic Illness."

Don't panic...just get treatment ASAP. The longer you go without treatment, the worse damage to your nerves. I was told I would never walk again, but I am. I have to wear afo's and use a cane, though. It will be four years in March. I went from being paralyzed from the chest down to walking. My hands and arms very affected too. I also dropped things all of the time. Things would fly right out of my hands. I also had terrible shaking at times, felt like I was wearing socks when I wasn't. I walked like I was drunk before not walking at all. I was like dead weight. People had to even transfer me to and from the toilet. Be strong! There is treatment out there for you. I also found CIDP while researching my symptoms. I asked my Neuro at the time to do an EMG and Spinal Tap and she laughed at me. Yep! The bitch laughed at me. And of course refused. I still have numbness in my feet. It is much better now. They still get cold though...really bad. I have to elevate them and keep an electric blanket on them almost all of fall and winter. I was treated with IvIg and now I am on Cellcet and occasional SoluMedrol. Remember: The earlier you get treatment the less damage you will have long run. I want to say that I got a definite dx of cidp after having a spinal tap and an emg.

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Go NOW!!! Do not wait!



Amie said:

Thank you all so much for your help and support. It has really lifted my spirits to hear from all of you and know I'm not alone. I will definitely call and see if I can get an appointment any sooner. I few months ago I did go to Mayo Clinic in Phoenix, AZ but was not able to stay long enough to finish testing. I have been considering going back over Christmas break from school if this new neurologist doesn't know what to do. Is Mayo clinic a good place to go to get a diagnosis and for treatment?

16

Hi Amie,

Lots of good advice here. In particular, I agree with Michael Stark - do whatever you can to see a neurologist right away! If you can't get the appointment bumped up, go to the emergency room in the best hospital near you, and tell them that you need to see a neurologist right away. There are some very effective treatments, but the longer you wait to start, the longer it will take for them to have an effect.

There are three common treatments for CIDP: steroids, IVIG, and plasmapheresis. I have had all three. The steroids did not help me at all, and I wound up flat on my back, in the hospital. I actually was hospitalized three different times, unable to walk. The first time they gave me IVIG, and I was back on my feet in a few days. The second time was a different hospital, and they did plasmapheresis, which sorta worked, but was not as effective for me, and didn't last long. The third time I was back in my home hospital, got IVIG again, and again it worked like a charm. But, everyone is different, and responds differently to different treatments. I have met people for whom steroids worked great, but as I said, they didn't do anything for me.

So the message is: if the first treatment doesn't work, insist that they try another one.

There are many horror stories of people who had trouble getting diagnosed. Keep fighting! If you get someone who is not familiar with CIDP, try for someone new. It's a rare disease, and many doctors have never heard of it. My family doctor has asked me about my experiences several times, and jokes that I am educating him.

Fortunately, I had a good neurologist, who was very familiar with CIDP. Even then, it took months to get my treatment straightened out. I still get IVIG every few weeks. But, I am now stable and leading a pretty normal life. I am not as strong as I used to be, and I get tired easily, but I can do most things that I could before, including driving, going on vacation, and so on.

So, hang in there! There is hope!

Bill

17

I can relate to what you are saying. It took me a year and a half to get diagnosed. But I did have a really good family physician who honestly said he had no idea what I have. I got every diagnosis from a stroke, to its just my osteoporosis and yes to the point where they would just say I have no idea what you have. Perhaps its arthritis. It is very very frustrating. It wasn't until over a year later I had my appointment with the neurologist that she accurately diagnosed it. Even when I went back to my family physician he had never heard of it. I cannot say to you to not be scared because the fact is it is scary when you do not know what the next day will bring. Some really good advice I got was to join this group, do my own research (although be careful with the internet because everything is out there), check out the medical pages on the net if you can. Once you start to educate yourself you can take charge of you and relate to the doctors look I have this symptom, this symptom etc and I want this type of test. The neurologist will most likely give you a nerve test and he or she will be hopefully the most valuable asset to you on what to do next. Keep records of what is happening to you and when. And do not let them send you away before you understand what they are saying and if they say I do not know then say to them okay you do not know what I have but I need to know who to contact next so I can take the next step to eventually lead to treatment. You are the one in charge of your body You are not alone you have all of us here and I know 3 weeks is a long time it seems I am sure if it is a neurologist you will have some answers. Write down your questions, symptoms ahead of time. And do not let the Dr leave until all your questions are answered. Remember the diagnosis that they tell you and eventually that scared feeling will lead to you becoming a fighter to fight for a solution to this. But you are not alone and when you become scared write into one of the members on this site or write to me if your having a really bad day. My member name is power of the mind and I am also on FB with some other CIDP links under my name Cindy Moet. Please take it one hour at a time, then one day at a time etc but remember there is a diagnosis out there for you but it will take you to become proactive to find the answers. And by doing that it will help with the feelings of the unknown and being scared. Please stay in touch if you like or one of the other members. We are here for you.

Cindy

18

Hello Amie

Do not stress about school, focus on finding the right Doc's and getting treatment. It took me a long time to let go and concentrate on fighting this illness. My life revolves around physical activities and it has been a big adjustment, but everyone here has been through it. Good luck and keep us posted.

Alonzo

19

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.

20

We are all praying for you and please keep us updated. I am happy that you got the new doctor which sounds like he has the empathy and will do everything to find out what is going on.

Keep us posted

power of the mind - Cindy Lou