Living with CIDP-My Journey
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.
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.
- CIDP Chronic Inflammatory Demyelinating Polyradiculoneuropathy
CIDP CIDP Chronic Inflammatory Demyelinating Polyradiculoneuropathy & Autoimmune diseases target women, stress and infections trigger them, learn symptoms, diagnosis, treatment, diet, tests from doctors , UPDATED OCTOBER 2011