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Living with CIDP-My Journey

Updated on March 25, 2013

My journey with CIDP: Part 1

Where do I begin? Well, you may be asking, "What is CIDP?" CIDP is short for Chronic Inflammatory Demyelinating Polyneuropathy. "What?" That is what I asked when told that I had this "rare" autoimmune disease. When the doctor first started talking it went in one ear and out the other, I was stunned. Here I am, 43 years old and now have a rare disease that I have never heard of, let alone know what to expect in the months to come, but at least I had an answer to what was going on with me. Let me now start from the beginning. This is my journey into the world of the unknown.

It all started back in May 2012. I went to visit my daughter in North Pole Alaska for 10 days. For anyone who has ever been to North Pole Alaska knows, there is nothing to do there. They lived just down the road from Eielson Air Force Base and my daughter had access to get on base because she worked there. She was kind enough to get me a pass in case I wanted to venture around so, I took advantage of it one day and attempted going for a run on this cool trail they had built through the woods. I did say "attempt" running because I am not a runner by any means, but wanted to give my hand at it and see if it was a sport I could learn to enjoy. I had previously downloaded an app on my Iphone, Couch to 5K. This helps you build up that stamina to be able to eventually run a 5k. I noticed, while running, that I couldn't really run on my toes hardly at all. That typically is not how I run anyway, but I did try it and found some difficulty in it which I thought was odd because it had never been a problem before. That was the first sign I saw that started this journey with CIDP.

Fast forward a few weeks and we are now in June. My friend Nicole and I decided that we wanted to start walking to get into shape because I had given up on the running. After trying it a few more times on the treadmill at the gym, my legs decided they could not take it. They tired out too quickly and could not heal in a timely manner, which I realize now was part of my disease. Nicole and I would walk 4 miles, at least 3 nights a week, and I began to notice that, the longer we walked, the slower I got and the more tired my feet and legs got, the harder it was to stand on my tip toes. Do not ask me why I even thought to see if I could stand on my tip toes because I have no clue. Once my legs rested, everything was back to normal, I could walk okay and I could stand on the toes. As time went on I developed a small limp, I couldn't wear flip flops anymore, my feet and toes would go numb and the one thing that really scared me is that I could not bend my toes, which is why I could no longer wear flip flops, no grasping of the toes to hold them on my feet. Over time I started to develop back aches and pain down the back of my leg. Because my dad had back surgery from a herniated disk when he was about 45, I figured I was just having the same issues so, I wasn't that concerned.

July rolls around and we took a family vacation to Port Aransas. This is when I noticed I was having trouble getting up and down out the chair. My legs were getting weaker and now my balance was off as well. I was starting to get a little more concerned, but not enough to go to the doctor. My refusal to go see a doctor was not because I am stubborn, well I am, but that is not my reason. I didn't have insurance and I couldn't afford to get insurance. I am self employed doing apartment locating in San Marcos TX. Good money, but we don't see the big chunk of it until after the students move in which is in the fall. So, i just let this problem persist and learn to live with it and work around it.

Now comes September, my fiancé Chris goes to the doctor for a physical and explains to him what was going on with me. We use the same doctor so I told him to tell the doc my situation. The doctor tells him "Tell Stacey to take ibuprofen every day, twice a day, for about a week or two and if she doesn't see any changes then have her come see me and I will put her on steroids." I did what I was told and it did not help. I went to visit a friend who takes steroids for Rheumatoid Arthritis and she just gave me a bunch of hers, I took one a day for 10 days, no help. I finally broke down to go visit my doctor and he explained that although I did the right thing, it wasn't the right dosage. He prescribed me my own which was a 10 day cycle and a higher dosage each day tapering down to 1 day for the last 2 days. He explained to me that if they did not work then he would suggest getting a lower lumbar MRI. Geeze, thanks doc, I have no insurance and now he is suggesting an MRI? Sometimes I wish the doctors just had the magic answer and the magic potion to fix you up without costing a fortune. The steroids did not work so, now time to stress over how I am going to pay for this MRI.

October is upon us and it starts to rain money in the Real Estate world of apartment locating. The properties are paying their bills and locators are getting paid, of course I have to split it with my Broker, but it was still a nice little shower, so to speak. Now I can get my MRI, time to call some of the places my doctor referred me to. Well, I only ended up calling one because when I asked if they had a cash discount they said yes and it would only be $540. I was expecting way more than that so, I jumped on it. After getting the MRI I waited a couple of days and got the call from my doctors nurse with the results. Everything came back just fine, no problems, no herniated disk, nothing to show MS, nothing, zilch, perfect back. Good news right? Well kind of. I was glad to know I would not be looking at expensive back surgery, but now I am still in the dark about what is going on. My walking is getting worse, I have people asking me why I am limping, if I am okay, did I hurt myself, etc. I set up another appointment to see my doctor and this time, we decided to run some test and check for diabetes, B vitamin levels and thyroid levels. The very next morning, my doctor himself personally called me, which NEVER happens, explaining that everything came back normal and that he was very concerned and suggested I go see a neurologist, which he had referred some to me during my last visit. It is November already at this point and close to Thanksgiving. I decided to suck it up and cough up the money for insurance. I applied through Humana and was declined due to a pre-existing condition of sciatica, since that is what we thought my problem was at first. Great, now what do I do? I was so depressed by this time that I was thinking the worst. Could I have cancer? Would I even be able to get insurance? I googled Obamacare to see what my options were and one of the benefits we get right now is insurance for a pre-existing condition, I was very excited to see this and applied immediately. I showed proof that I was declined by another insurance company and got approved through this Obamacare. Of course now, I have to figure out how to come up with $249/mth for insurance, but where there's a will, there's a way. By the time I applied and got approved, it was already toward the end of December. I finally got into see a neurologist and he sent me for LOTS of blood test and we also scheduled a nerve conduction test and an EMG. Blood test came back clean and clear and the EMG and nerve conduction test did show some nerve signal problems. The doctor pulls me back to his office and tells me he now wants me to get more blood tests, gotta check for everything under the sun, right? And he also wants me to get a lower lumbar spinal tap to check for protein levels that may not necessarily show up in my blood. Of all days, this spinal tap was scheduled for New Years eve, grrrrr. I could have postponed it, but I was ready to figure this out and see if I could finally get some answers. If you have never had a spinal tap, they tell you to stay flat on your back after the procedure for several hours afterwards. My New years eve was spent laying on the couch all day and night. I wasn't allowed to drink, but I had to ring in the New Year with at least one glass of champagne. I was fine, that little bit of alcohol did not hurt things, I had to bad headache or bad side effects from the spinal tap. My next doctor's appointment was scheduled for January 4th. This is when I would get my answers.

Me, in May 2012 at the start of this journey.
Me, in May 2012 at the start of this journey.
North pole Alaska at Santa Land
North pole Alaska at Santa Land
Santa's House in North Pole
Santa's House in North Pole
With my son in law enjoying some hot springs in cold Alaska.
With my son in law enjoying some hot springs in cold Alaska.
The Alaska pipeline
The Alaska pipeline
Part of the trail I ran on at Eielson AFB.  Nice trail built for the service men and their families to enjoy a stroll or a good workout.
Part of the trail I ran on at Eielson AFB. Nice trail built for the service men and their families to enjoy a stroll or a good workout.
North Pole was not the only place I got to visit, Thank God.  This is in the Denali National Park.
North Pole was not the only place I got to visit, Thank God. This is in the Denali National Park.
My bucket list has been punched.  Before going to Alaska I had said my trip would not be complete without seeing a real live Moose in the wild.  This one was running down the road and decided to stop for a bite to eat.
My bucket list has been punched. Before going to Alaska I had said my trip would not be complete without seeing a real live Moose in the wild. This one was running down the road and decided to stop for a bite to eat.

My Journey - Part 2

January 4, 2013...The day my world was turned semi upside down. "Mrs. Dematos," the doctor said, "Your results from your spinal tap came back and you do have high levels of proteins in your spinal fluid which does tell me that you have C.I.D.P. Chronic Inflammatory Demyelinating Polyneuropathy." My eyes clouded over and I stopped listening for a bit because he had mentioned it being a possibility in the last visit, being the reason for getting the spinal tap to begin with. When doctors talk to you they do not always speak in terms that we as laymen can understand. What it all boils down to is that CIDP is an autoimmune disease where your immune system attacks the myelin sheath on your nerves, if left untreated it could eventually cause nerve damage and leave one in a wheelchair or even death if it moves up into your respiratory system, but that is even more rare than the disease itself. The myelin sheath can repair itself, but this takes time. Courses of treatment are steroids, IVIG, plasmapheresis or chemotherapy drugs. The small dosage of steroids I took before did not do the trick and a higher dosage for a longer period of time can cause weight gain, among other side effects that I am not interested in. IVIG is immunoglobulins intravenously administered to the patient and each infusion could last 3 to 8 hours. Plasmapheresis is a plasma exchange, they remove your plasma and exchange it with a healthy plasma. Chemotherapy drugs, well we all know about those, it wouldn't be the kind to make my hair fall out, but he never said it wouldn't be the kind to make me nauseous. My choice...IVIG. The doctor wanted me to get more blood tests and wanted me to start treatment immediately. First round would be three treatments, one treatment a day for three days in a row then going down to once a month until July. So many questions yet, I didn't know where to start. The doctor wanted me to start treatments right away, within a week, seriously? Has he heard of insurance red tape? I went home and researched this treatment and what to expect, first of all, it's not cheap. I had no clue what to expect for my co-pay since I didn't know the exact amount of the treatment. Stress and depression set in, luckily we were going to our friends ranch house in the Hill Country for the weekend to get away and I could get my mind off of this.

After a few weeks of waiting and getting the approval from the insurance company, I was able to start my first round of treatments. Cost of medication for the three treatments came to $916 along with an additional $246 for the use of the infusion center. Definitely not cheap, but I also didn't want to end up in a wheelchair one day and live on disability. I was scared when I first entered the infusion center since i did not know what was ahead. I made sure to take my Ipad for entertainment. I had no idea if I would be one of the lucky ones and only be there for 3 hours or if I would be stuck there all day, it all depends on how your body reacts to the medication and the speed at which it is administered. The IV was put into my left hand, I was able to sit in a nice, comfy recliner with a TV above me and it seemed that most everyone there was sleeping, besides the nurses, of course. They gave me some tylenol and benedryl, stuck the needle in my hand and left me to my own devices, which started out with watching TV on my Ipad. Before you know it, I too was passed right out, probably from the benedryl and the fact that it was way too early for me to be up. Before I knew it the treatment was complete. It took a total of three hours for me, I was happy to hear that because it is very hard for me to sit still and there is no way I could sleep all day to keep from being fidgety. The next two days went the same, no bad reactions, no side effects later, just a nice little 3 hour nap.

When I was finished with my first round of treatments I immediately tried to see if I could stand on my toes or bend them. Sad face, no chance in hell. I wanted immediate results, I have no patience, but someone is obviously trying to teach me some. A couple of weeks went by and still no results, then by the third week I noticed my balance was getting better and I no longer looked like a bobble-head when standing still in one spot. I went for my next treatment at the end of February and now my walking is getting a little better, but I still cannot stand on my toes, bend them or wriggle them and my feet still go numb at night, but I notice the nerves tingling and twitching throughout the day, which I think is a good sign. My legs still get tired if I walk too much, they still feel like cement blocks are tied to them after a short distance, but I do see some improvement, with the exception of the day I tried walking across the street from my office and couldn't, or didn't, pick my feet up high enough to step up on the curb and fell flat to the ground. Not enough time to stumble, fell just like a tree that was chopped down in the forest. Luckily I fell into grass so I wasn't hurt and after realizing that I was okay i just busted out laughing. Now I try to be more conscious when stepping up or down from curbs. During the last treatment I was talking to the nurse about the cost of the medication, she said that it costs $1,000 per gram and I receive 37 grams each time. Wow, $37,000 per treatment just for the medication. I don't care how people feel about Obama or his healthcare plan, but I do know that I am thankful for him creating this option for pre-existing conditions.

My next treatment is tomorrow, March 26 and I'm hoping with each treatment I notice more changes, if not, the doctor wants to re-evaluate and possibly up my dosage. This is not a cure and it is not guaranteed to even work for me. Some people can see results within 24 to 48 hours after treatment, some may not see any at all. At least I am seeing something, but I just wish it would come a little quicker. If these treatments don't work then the next option would be chemo and I'm not too keen on doing that. If chemo doesn't work then I have read that a stem cell transplant can fix it and cure it, but there is no guarantee that my insurance would be willing to cover it.

I plan to keep this going and letting you in on my journey, with each treatment given is new hope for a better future. IVIG is derived from plasma donations, which cost the plasma centers money since the donors are paid which is why the medication is so expensive. If you are not a donor, or never have donated, please give it a shot, at least once. Plasma is used for so many things in the field of medicine and with your hour long donation, not only could you make money, but you could be saving a life.

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      Stacey DeMatos 4 months ago

      Janice, I love that you mentioned Craig. I became friends with him through the CIDP groups on fb. He is a sweet, wonderful guy and a wealth of knowledge. Yes, a raw food vegan diet can most definitely help. I tried it for 6 weeks before my transplant. I never felt better, but of course 6 weeks isn't long enough to see changes. I do highly recommend a organic vegan diet as I believe our foods can be our medicine if you choose the right ones. Stay away from processed foods, stick with Whole Foods and go organic as much as possible.

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      janice 4 months ago

      Google no egg craig. He had what you have and was in a wheelchair. He went vegan and is now healed.

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      Maryhelen 6 months ago

      Hi Stacey,

      Like so many of the others, I am greatful for the light you have shed on this disease by means of your journaling, you answered questions that I didn't know I had since I am not the one with this illness my 48 yr. old brother is. The falls, heavy feet & fatigue were the first signs. Hospitalized in Oct.2016 , fell up a curb, I scolded him for not paying attention... back in the hospital right before thanksgiving from a fall began experiencing tremors in both hands and he evetu

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      Robin Morgenweck 15 months ago

      Hi Stacey

      I have two questions. First, since your stem cell transplant you are now in remission. What is that like for you? Have all your symptoms gone away? Do you still have some? Second, can you now stand on your toes?

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      Jeff Fostet 15 months ago

      Need some advice /direction. My 13 year old son was just diagnosed with CIDP. We have the initial IVIGload behind us and are looking at PT. We go back for second IVIG in 3 weeks. I have read about nutrition and changes in diet making a difference. What suggestions do any have that will help the body heal? What foods should we avoid/embrace?

      Jeff

    • StaceyDematos profile image
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      Stacey Dematos 18 months ago from Buda, TX

      Rockinrobbin: After my stem cell transplant in March 2014, I improved, but my nerve conduction test does not show much improvement and my EMG shows significant improvement. When I go back for my follow up evaluations, the neurologists asks me, "How do you feel?" I tell him that I feel great and he said that is what's most important. The tests are not always 100% accurate, but we know how we feel. If you know that you are improving than you probably are. If the doctor starts to cut back on the treatments and you see that you are getting worse because of it, I would recommend giving Dr. Burts office a call in Chicago IL and research on getting this stem cell transplant. I am almost 2 years post transplant and in REMISSION. I completed a 36 mile bike ride in October 2015 to help raise money for MS awareness, since CIDP doesnt really have anything. Dr. Burt will be at the GBS/CIDP Symposium in San Antonio TX this September talking about HSCT. It's risky, it's not a treatment for everyone, but it wsa the best decision I ever made and I am so thankful and grateful for getting my life back. What Sheila Duggan said in a comment above is also true, a VERY CLEAN and healthy diet could also be the answer. I have heard of many people changing their diet habits, no processed foods, no gluten, no sugar, no salt etc and going into remission, the food we eat plays a HUGE part in our health and we need to watch what we put in our mouths. Also, my faith in God got me through this whole journey. I too, like Sheila, used to want to just "check out" and I prayed hard every single day. When I was told by my insurance that they would cover the stem cell transplant, Reality set in and I was scared to death because the doctor said that I could die from it, but so far nobody has. At the time, I didnt care because I would rather die than live the rest of my life with CIDP. I later learned that I had a very aggressive form of it and it was moving into my respiratory system. One day, I was sitting on the couch and talk to God, I told him I was giving it all up to him because I could not deal with the worry and the stress and a huge weight was lifted off my shoulders at that moment. I never worried another day after that and still dont. I know that my disease could eventually come back, but I'm not worrying about it because there is nothing I can do about it. I take the steps necessary to control it, by eating better, and I pray that I am doing what it takes to keep the beast away. I am living on top of the world right now in my recovery from CIDP. I have found my purpose and my passion, to spread the word about this stem cell transplant and to help others. Good luck, please keep me posted. You can find me on Facebook under Stacey Turley Dematos, if you are on facebook, please add me. If you are more interested in learning about Dr. Burt, do not hesitate to reach out. You can also go to his webiste and learn more. Watch the videos, there is a particular one labled "CIDP HSCT Story" everytime I watch it, I get tears in my eyes. Here is the website: http://www.stemcell-immunotherapy.com/

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      Rockkinrobbin 22 months ago

      I just signed up today and feel relieved that although this condition is rare, there are others out there just like me. I have been looking for description of symptoms and how to explain them so my doctor understands. I have been getting treatments 5 days in a row every 3 weeks and have shown vast improvements in my muscle strength. And now the IVIG seems to be improving my mobility because my numbness is subsiding. Unfortunately, although he can measure muscle strength and chart it, he has no test to prove that the sensation is going away. It is strictly based on my say so. For reasons unbeknownst to me, he insists that after this last treatment he will be cutting me back to only 3 days per week which would definitely diminish the strength of the drug. I have lived with bricks on my feet for years and was more anxious to eliminate that sensation than gain strength back in my leg muscles, however, the doctor is convinced that I am no longer improving but I know how the sensations feel and they are definitely diminishing. He tells me lots of patients feel they are improving when actually they have not. That is not true in my case. I have been reading this website to find some way to supply medical proof that I am still improving and not ready yet to go on maintenance. If he cuts back, I will stop improving and my condition will remain as is or worsen and I can't accept that I can feel almost close to recovered if only for a short period of time. Any suggestions?

    • StaceyDematos profile image
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      Stacey Dematos 2 years ago from Buda, TX

      Janet, I just logged in today so that I could do just that. I am 15 months post transplant and figured it was time to finish my story.

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      janet 2 years ago

      Hi Stacey. Please share with us the rest of your story. My husband has been suffering from CIDP for the last 3 years. He has plasmapheresis 3x a month as well as intagram once a month. They're not effective on him. We would love to hear about your stem cell treatment. Thanks.

    • StaceyDematos profile image
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      Stacey Dematos 2 years ago from Buda, TX

      I really need to update my blog. I am free of the beast we call CIDP. I went in March of 2014 to Chicago for a stem cell transplant with Dr. Burt at Northwestern and I am now in remission. Things are back to normal. There is Hope.

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      Mike 2 years ago

      20 years to diagnose and still not getting IVIG because protein is normal. I am bedridden most of the time, gasping for breath, it has got to my lungs. I was diagnosed with GBS 20 years ago, it went away, came back two years later, I have been to 7 different neurologist, My problem is I was diagnosed with CIDP 8 years ago but then went for confirmation at UCSF who told me they did not know what I had but it was definitely not CIDP, now again diagnosed with it. On major Opiate doses, and still unable to control the pain. My wife thinks it is going to kill me before I ever get treatment. I guess we will find out. My neurologist will not do a nerve biopsy because of the problems it has caused his other patients. Nerve conduction studies and my numb feet, and hands also help my diagnosis. Waiting and hoping.

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      Stephen Graff 2 years ago

      I was diagnosed with CIDP in October and started IVIG in November. So far, not noticing great improvement. But there are so many variants of this illness, and treatment options. All I can do is put this to prayer, praying for strength. But it's good to know that others out there are sharing their experiences.

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      sheila duggan 3 years ago

      I was diagnosed two years ago with a very rare chronic autoimmune disease called CIDP (Chronic inflammatory demyelinating polyneuropathy) I suffered from severe weakness. I got so weak that sometimes I could not get out of bed. I went to UCLA and the experts there diagnosed me with this horrible disease. They told me that if I did not start Iv treatment to load my body with anitibodies I would end up in a wheel chair. Well stubborn me fought them off for a while. They chased me down and convinced me I needed it. I consulted my general practitioner and she highly recommended it. They told me if I didn't do this treatment I would end up bedridden and in a wheel chair. So I went for it. I had great success with it. I would sit at home with a nurse at my side every 4 weeks while the blood from lots of people was pumped into me. It was awful. I hated every second of it. I suffered from severe migraines for days afterwards but I could get up and walk after a few days of residual weakness from the meds. I was 75% back to normal. So for two yrs I fought hard because I couldn't accept this was my fate in life. I have two young kids at home. How could this happen to me. But we have an awesome God. I prayed hard and I prayed a lot. I always thanked God for healing me in advance every time I prayed. I quit eating gluten, nothing changed I was still weak. My right leg started to shrink, the muscle started to waste. Now it's 1 1/2 inches smaller than the left. and oh yeah it was starting to hurt so bad. God sent me to the right people who gave me hope and my faith in our God got stronger everyday. I never felt that I would or could be a victim of this so called disease. I always felt from the beginning that they really didn't know what was wrong so they gave me a label based only on symptoms. I had 4 mri's in one year, spinal tap, nerve conduction studies, and so many blood test I can't even count how many.The neurologist made me very depressed, so depressed that I just wanted to punch out if you know what I mean. There were many days that I could not think of nothing else but leaving this world. And most of you know that, that is not who I am. I made so many appts with the Neurologist and canceled them because I couldn't bring myself to go to her again and get very depressed. Many times I thought to myself that I would have been better off with cancer or some other disease. Every test, lab, mri came back negative. But God had a plan and opened all the right doors. I found people and doctors that gave me hope and with doing some research on my own and changing my diet, I can honestly say I am healed. I never had that stupid disease. It makes me angry that people will just believe whatever the doc tells them when they really don't know. People I am telling you to Never Ever Give Up (NEGU) God can heal you. He can direct your path. He does hear your cries. I am living proof that there is hope. And you know what, all it took was faith, hope and believing that I could be healed. All I had to do was change the way I was eating. Yes I will have to sacrifice a lot of things and unfortunately I am one of the ones that did get sick from food. Gluten, Dairy, sugar, and much more. But today I am one happy camper. And having to give up all those foods is no sacrifice at all. I can walk, I am happy and I have joy.

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      Lily 3 years ago

      Hi

      Sad to hear all the stories. I am 53 years old. On August 2010 all the horrible symptoms showed up. Falling like a log

      For no reason, unable to pick up my feet to cross the street before the light changec, unable to step up to a curb.

      I had to quit my new job, i was not able to move the computer mouse. So now

      I don't know what's happening to my

      Body, no job, no money, No Insurance.

      I decided to go to a neighborhood hospital. I was told i had anemia.

      Went back home, symptoms getting worst. I applied for countys medical help, finally a Doctor. He examined me and said you need to go see a neurologist, and he called one, himself.

      He was very concerned.

      I spent two years on a wheelchair,both my hands closed like a fist. My husband

      Was my caretaker, my angel.

      He fed me, bathe me, dress me up.

      My whole body was paralized.

      I have had plasmapherisis (3) sets

      Lots of IVIG, physical therapy, hand surgery to try to open my right hand, even the surgeon was not satisfied with results, hsnd opened approx 20%.

      My GBS CIPD was not treated aggressibly, and not fast enough.

      I still receive IVIG once a week for seven hours. My legs are numb from knee down, lots of horrible pain 24/7

      My hands are distorted, only half open,

      I walk a few steps and blackout need to sit down. My condition will not get better, my nerves on my hands and feet are damaged.

      Anyone that turns out with these symptoms , Please due everything possible to see a doctor immediately

      And start treatment.

      Good luck, and God Bless you all.

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      Kymara Boyle 3 years ago

      Sheila; If you haven't had a confirmed diagnosis yet they can do a sural nerve biopsy. They take a piece of your nerve out of your ankle. I have CIDP and had one. My spinal tap was also un conclusive. Yes, the downside of a nerve biopsy is a numb section of your foot (for life) however if the nerve they remove is under atack or has been they can see it/tell. Mine was under attack (75%, highest they had seen). My CIDP remained undiagnosed for 10 years and unfortunately every day that passes without treatment permanent damage can occur. A nerve biopsy can positively identity that CIDP is what you have . . . . Good luck with your journey xxx

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      Stacey Dematos 3 years ago from Buda, TX

      Update on my condition. IVIG worked for awhile, but now my hands have gotten worse, have trouble buttoning and zipping and doing my hair. Fine motor skills are out the window at this point. Now I'm just doing Prednisone, which has helped with the strength in my legs, but not my hands. I have decided to look into a stem cell transplant to hopefully knock this out completely. I have already met with a dr. in Chicago who does it and have gone through all the testing, now we have to wait and see if insurance will cover it.

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      Wendy 3 years ago

      My son is in the middle of being diagnosed now. 15 and in April the same happened almost overnight he couldn't walk. High Protein Lumbar and has since had 6 Immunoglobulin Infusions and 2 Steroid Infusions and tablets. Nothing is working for him now although it was initially. He was diagnosed with Guillain Barre but as the improvement has stopped we are awaiting a 2nd opinion which his Neuro Doc has asked for. Been in a wheelchair for 7 months now. Worst thing is adverse affects are he is losing muscle in his legs and the muscle experts are saying he has feet of someone who has had a stroke and may end up in a leg brace. Nightmare but he'll be ok in the end ... I hope :)

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      Sheila 3 years ago

      I was recently diagnosed with CIDP. But my spinal tap did not show any proteins. I do have some of the symptoms but I am either in denial or I don't think this is what I have. I have been receiving IVIG every 3 weeks and have tried to stop cold turkey but I get so weak now that I am dependent on it. Is that normal? I am so frustrated I don't know what to do. thinking about getting another opinion.

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      john 3 years ago

      hello in 2009 I collapsed at home legs gone would not work hospitalised and eventuly diagnosed with cidp have been having plasma now ever since but not too good as far as results go could be the age that I am not 86 too sure am now getting about on a mobility scooter. thank goodness for our medicare all no cost system at no cost to me plasma once a month. finally I wish you well

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      steinham 4 years ago

      My husband has had CIDP for 18 years. It wasn't until 6 years later that he was diagnosed. Since then, for 12 years, he has bi-monthly treatments of IVIG which has slowed down the progression. While he is able to walk, it is still progressing to the point where his balance is unsteady and he is unable to jog or hike or participate in any of the sports he used to do.

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      hambn672305837@aol.com 4 years ago

      My husband was diagnosed 3 years ago with CIDP. The IvIg treatment did work for him along with physical therapy. He has residual leg weakness and pain. I would like to hear from anyone whose case is similar.

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      Imran Khan 4 years ago

      I loved reading this article what a beautiful story and a lesson of hope for all those who are suffering.

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      Richard Pomeroy 4 years ago

      I have CIDP too. IVIG for around 4 years now. I am so grateful for this treatment. It works for me.

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      Riviera Rose 4 years ago from South of France

      What a story - I do wish you all the best. You have a beautiful smile (and look way too young to have a grown daughter!) and you sound like a very positive person - keep smiling!!

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      debbie 4 years ago

      wow, your symptons sound so very much like my own. i have an appt with a top neurologist next week and i am very scared. i have had increasing symptons now for 9 months and never wanted to believe there was something seriously wrong with me. i hope you have improved significantly. god bless.

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      Kenzie's mom 4 years ago

      My daughter was diagnosed with cidp when she was 5 it hit her do fast and so hard within months she was wheelchair bound. She is turning 10 this year and with physical therapy and ivig once a month for 4 days she running and living an active life.

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      Michelle Ross 4 years ago

      I have also been diagnosed with cidp and I just don't feel like I have had the "easy" ride you have had. I am on morphine patches, regularly go into hospital for pain management etc. I am happy you are not suffering believe me, but just want people to know that there is a truly awful side to cidp too. I wish you well xxx

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      JR Krishna 4 years ago from India

      Hi. I read the article which you have written. I know it is not easy to go through all these. but you are very brave and confident. I am sure with immunoglbulin treatment you have improved!

      Hope you are better now.

      Thanks for sharing your experiences and feelings.

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      Brian Leekley 4 years ago from Kalamazoo, Michigan, USA

      Up, Useful, Interesting, and shared with followers and on Facebook, Google+, Twitter, and Pinterest. Maybe another, or others, will benefit from the information you are sharing, about the diagnosis and treatment of your condition and about the positive role Obamacare has had.

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      Linda Bilyeu 4 years ago from Orlando, FL

      Yay for ObamaCare! I'm glad you were able to benefit from it. I hope you are doing well now. Thank you for sharing with us!

    • Made profile image

      Madeleine Salin 4 years ago from Finland

      What a journey! I have never heard of CIDP. I really hope you are doing better now. Thank you for sharing your story.

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      Dora Isaac Weithers 4 years ago from The Caribbean

      Sorry to hear of your condition. You are very brave to journal and share your journey with us. Never heard of Chronic Inflammatory Demyelinating Polyneuropathy. Hope the IVIG treatment is helping.

      Thanks for following me. Will be one of your followers as soon as you begin to write again. Promise!