CIDP- well, we all should have a medallion we hang around our necks that reads:
CIDP VICTUM -THIS PERSON MAY BE EXPERIENCING INTENSE PAIN, ERRATIC BEHAVIOR, WEAKNESS BECAUSE THEY MAY BE ON MULTIPLE MEDICATION OR EXPERIENCING A SYMPTOM OF CIDP (WHICH MEANS: Chronic Inflammatory Demyelinating Polyradiculoneuropathy. THEREFORE THIS PERSON MAY BE IRRATIONAL OR ANGRY AT THE WORLD BECAUSE NO CLINICAL TRIALS HAVE PINPOINTED A SPECIFIC CAUSE; NO FAMOUS PERSON HAS THIS DISEASE; NO COMBINATIONS MEDICATIONS ARE FULLY ABLE TO AMELIORATE THE PAIN, DYSFUNCTION AND DESTRUCTIVE MEYLINIZATION OF THE AFFECTED MUSCLES OR THE SPINAL NERVE ROOTS OF THE PERIPHERAL NERVOUS SYSTEM. IN EMERGENCY OR FOR INCESSANT ANGRY BABBLING AND WHINING, GIVE THIS PERSON AN INFUSISON OF HUMAN IMMUNOLOGLOBIN G (GAMMAX BRAND ONLY). WAIT THREE OR FOUR DAYS FOR RESULTS, MEANWHILE TREAT HEADACHE & NAUSEA SIDE-EFFECTS WITH MASSIVE AMOUNTS OF TYLENOL AND CAFFEINE. REPEAT INFUSIONS EVERY TWO-THREE WEEKS. SEND THE BILL AFTER THE INFUSIONS ONLY !!!
LOL
NEWONE said:
Thank you so much for sharing your story. I have gone to the emergency room twice now in pain. Mostly because of fear of my thoughts I had of taking illegal drugs and suicidal thoughts, but I was careful in what I said. Of course I got no help but a bill for going to the emergency room. The last time I went they didn't even know what CIDP was nor did they even recommend any of their own neurologist so I find it a very strange experience.
I really feel for you and your situation and wish I could stand before a court and testify that certain drugs make you do crazy things. I finally took matters into my own hands and asked to be taken off some of my medications and finally feel a bit mentally like myself again although my forgetfulness is still there.
I had one other time that I had pulled over to text in a rural area because texting is illegal here while driving. I was on about 15 medications at the time but my sister was trying to call and couldn't get through so I pulled off into a ditch. It was a dry hot summer so I wasn't worried and the ditch was small. Well I finally got a signal and we were able to talk. Then I noticed I was stuck in the ditch because the farmer had irrigated his field and the run off went into the ditch and I was unable to get out. A car came by and said he would be right back to pull me out. Well instead he called the Sheriff and when the Sheriff got there I couldn't answer any questions, tell any names and I was quickly hand cuffed put in the back of the car for 3 hours. He wouldn't let me use my phone and I couldn't remember anyones name or phone number. We had to sit there until a tow truck came to get my truck. I was able to slide my cell phone out while he wasn't paying attention and look though my text and texted a friend that was a social worker and get the number which I then gave to the officer. Luckily my friend explained that I was put on a bunch of new medications and he let me go but I had to be driven and my truck towed to an ATM machine where I had to pay the fun $300 for the tow. So I do understand what medications can do. I was put on all these medications by a primary care doctor without my neurologists knowing. I had thought the doctor was in touch with my neurologist but he hadn't been notified. I was much luckier than you as I could have been arrested for a OWI which here would have been thousands of dollars and I couldn't have ever got that off my record at all.
I think with all medications we need to be watched more especially if we are on multiple meds. But I came from growing up in a rural town where I had the same doctor until I graduated college. I thought all doctors were good and only helped you. I certainly know much better now, but with pain medications I think we all just need to be careful. I'm trying my best to get off what I can and deal with the pain since the strongest one I am on has no effect what so ever.
I wonder how many others have gone through these types of things. I think yours must be the worst I have heard, but it certainly brings awareness to everyone and I hope many people will read your post.
estaban said:ALOHA NEW ONE,
I sympathize with your plight! All we can do is hang in there. And, exercise as much as you can, no matter what your state of disability.
I believe I've had an on-going battle with CIDP for over 15 years. I also had a cervical neck problem; degeneration at C2, and L4-L5, which influenced the course of a late CIDP diagnosed and the subsequent treatment with IvIg/Imuran.
Here is a story of my CIDP treatment; amusingly ridiculous, but true. I was diagnoses in October of 2013, and only received treatment, after a nine months delay, because my primary physician became sick with Chron's Disease and didn't read my diagnoses by a substitute neurologist at Kaiser (HMO). Previous to this, I was seen by five different neurologists who all told me it was diabetic neruopathy, even though I had a serious foot drop, shortness of breath and facciulaitons that looked exactly like ALS symptoms. I actually was diagnosed with ALS for an agonizing two week period until a better neurologist looked deeper into me.
Anyway, two months into IviG treatment the routine changed to two- weeks infusions intervals at 150 grams/month. On December 31 2013, I was at the very low point of a relapse cycle, and, while waiting for my infusion, I mumbled an utterance that "my bag is very heavy... it 's full of bombs." These were not words I meant to say to cause harm, only words of my subconscious that I said aloud because I was on two maxed-out dosages of painkillers, etc. The day before the Stalingrad train station was bombed and all over the TV news cycles.
Ten minutes later, while the nurse was just about ready to insert the infusion needle, a CODE GREEN was announced over the clinic intercom and the entire building began an evacuation. After I exited, with my bag containing my lunch, my laptop, books and spare clothes, I was pulled aside by a Maui police officer, handcuffed and read my Miranda rights.
Most of the staff and patients of the entire hospital were led past me during the evacuation. I stood, teetering and sweating and weak, about ready to collapse from fatigue and pain. I was handcuffed against a police cruiser, while two detectives questioned me. My bag was placed far away for fear that it contained a bomb. I was the man of the hour, so the detective said, shaking his head as he realized how ridiculous the events of day had become. Ten police cruisers were in the clinic parking lot and I was sure the bomb squad would arrive at any moment.
After I admitted to my utterance, I was placed in the police cruiser, driven one block to the Maui County jail, booked and placed in a solitary cell. I fell asleep in the cell. About two hours later, a police officer arrived and I was released on my own recognizance.
To make a long and worrisome story short: I was charged with a Class 1 felony, Terrorism, had to hire a lawyer and I now await my day in court. Luckily, my lawyer was able to get the charge lowered to a misdemeanor of Disorderly Conduct. So far it has cost me over $500.
And what I've discovered is that no one realizes what CIDP is all about and no matter what your state of health if you tip the administrative regulations at a hospital you receive no slack from them. All my doctors have called this charge ridiculous, that a sick individual rants and raves and says foolish things when groveling with the disabilities and pain of CIDP.
Kaiser terminated my health coverage. At first they wanted to terminate me in February, however my union told them otherwise and I will be covered until July 1, 2014. I now have a Kaiser security officer with me at all moments when I am at a Kaiser facility. However, I have made friends with all the guards and staff, and they actually carry my bags for me when i go in for my 5-6 hours of infusions.
I will switch to Blue Shield (called HMSA here) and a whole new routine will begin. I will probably get six months probation. So, watch what you say! These events were a Kafkaesque nightmare which only amplified the problems associated with CIDP, the side-effects and the slow, time-consuming IvIG infusions.
Talk about a fight! My CIDP, exacerbated by this one foolish utterance, changed the entire course of my battle against this disease.
Best to you and keeping fighting for strength; mentally, physically and spiritually!
NEWONE said:Well right now I am still stuck. The doctor the did my nerve study was fired because he was telling everyone they had a neuromuscular disease. So I had a choice between doing the spinal tap or another nerve study. Because I studied the disease so much and knew that the protein doesn't show up in many people, and the spinal tap is becoming less of a tool to diagnose CIDP, I chose another never study.
So I went last Thursday for the study. I wasn't very happy when I found out that in no way could the previous doctor change any of the results that he had previously recorded. So I know there are names for the shocking and then the needle insertion , but that is all recorded into the computer and I think it then goes into the main frame of the hospital. I asked the tech first if the previous doctor could have changed those results and she said no, and then the doctor who was to do the needle part and she also confirmed that. He only wrote the report from what the computer gave on the tests saying I had CIDP.
So because of this the doctor decided not to do the needle part and this irritated me since my appointment was for noon and it was now almost 2:30. Then she didn't seem to want to listen to me. I have a cervical neck injury that gives me very hyper reflexes which are not usually seen with CIDP. So she was saying it make it harder to diagnose. I say thats a bunch of crap because the neck injury causes on thing doesn't mean the disease it not possible. I was ok with her going back and discussing everything with my neurologist to make a determination, but what if she missed something because she didn't ask a question?
She also told me that all this pain in my lower extremities may be being caused by my neck injury. So I told her yes I have some type of motor sensory neuropathy and I am aware that can be caused by the neck injury but the cause from that comes from trauma. She also didn't think I had been taking enough Gaberpentin which I am no longer on. It was making me go into a dark whole. I know it works well for some people but it wasn't helping me and making me depressed. Nor is the fentanyl patch so I'm getting off that too. If a pain medication is not working I don't see any reason to take it or any other medication that isn't working for the pain especially if it's giving you dark thoughts.
So I"m waiting for the conclusion. This doctor also i believe thinks I should be doing physical therapy. I do think all of us should move as much as we can but for me I can do as much as I can but if I do to much then it's only going to put me down and I've been through so much physical therapy in the past with absolutely no helping my situation I have come to the conclusion that it doesn't help me. I've had to learn on my own what I can and cannot do.
At least I"m finally out of that dark whole I've been in for so long and I got out and did a little gardening this weekend. Nothing to seriously but it did cause a great deal of pain which I ended up sleeping off yesterday. I feel a bit recovered today and may this week try to go to the grocery store by myself.
One thing I have noticed is that every year I have come back and been able to do a great deal of things that I normally can't do. Last summer i came back for only a month and 1/2. I thought if I fought it and kept going I'd beat it but it didn't work. I feel like something regenerates in my body and I'm somewhat ok although I still have a great deal of pain. I don't think I'll get that come back this year but things have changed to some degree. I now have bladder control again. Thats about the only thing I have noticed but it's something. I think what ever is going on that my body each year has not been able to heal to be able to do more than usual and each year that time has gotten shorter until this year I don't think it will happen. Now all these years I thought it was some miracles from God that this was happening to me. And maybe it still was, but I can't keep from thinking that maybe I have had this disease longer than I have thought and my own body had been able to heal itself for a period up until now.
So my hopes is since I really don't think they can determine one or the other if I have CIDP they will at least treat it as if I do and not keep me suffering through the pain. If it works then great and I'd know.
I wish someone could also tell me which treatment they think is the best since both the Prednisone and the IVIG has about the same remission rate which I think is about a 55% chance. Prednisone I could afford right away but I am very aware of the side effects and worried how I'd ever sleep on a 100 mg a day which is what I was told with that I'd be given.
The IVIG i'd have to find help with being able to pay for since I'm already disabled and I make just barely to much on SSDI to get full Medicaid. But is it easier on the body?
I can only now sit, wait and pray that they will try something and do my best to keep moving. It's really hard since I've been house bound and laying on the sofa for almost a year and 1/2 with the exception of the month 1/2 last summer. I'm very weak but now ready and more able to start fighting this!