GBS/ CIDP?

A little more than a year ago I started having sensory issues in my lower extremities. It got to the point that my legs would remain numb for extended periods and was quite scary. I saw my dr and had some blood work done. I knew it wasn’t a circulation issue, I checked all my pulses constantly, as I am a registered nurse. I had a sleeve gastrectomy done in February 2015 and started running again at 6 weeks post op. I also was having trouble eating, so we bought it was nutritional. All that came back with some deficiencies, but not enough to cause my problems. It got so bad and the numbness got worse while running. I started to only use the treadmill at home . I was also loosing sensation. It felt like I had thick compression stockings from my feet up to my thighs. By July 17 I’d lost about 70 something lbs and went to the neurologist. He had treated me before . I had a torn rotator cuff and brachial plexus nerve injury that turned into Complex Regional Pain Syndrome/ Reflex Sympathetic Dystrophy. The latter has no cure, but was/ is in remission thank GOD! He did many tests. I had no idea that it was affecting my motor skills, but apparently it was. He scheduled many tests and made a follow up in a week. He also asked me to not drive and said ,” I think you have GBS. You’re a nurse, you know how dangerous this can be. You call my office if there is any change. ” He also told me not to drive anymore and to bring my husband for the next visit. I don’t make the next visit. Four days later I went to the ER and was admitted. They first had me under stroke protocol. My motor skills started to deteriorate however, they weren’t really sure about the GBS. The attending neurologist was amazing but he would not do a spinal tap because he said he wouldn’t risk spreading my CRPS/RSD if it progressed to GBS, we would know. I respected him a lot more for that, because he could’ve ruined my life with one proceeedure. I don’t know it could spread that way. Well I developed foot drop and ascending weakness. They were going to send me to an acute rehab center . So a dr was called in to see if I was a candidate. This dr also thought that I had GBS . He went and talked to the neurologist and came up with a new plan. He was almost jumping up and down when he came back to my room. I was to be transported to his office , where he would perform an EMG with the nerve conduction tests. He would immediately tell me if the studies showed demyelination or not. If so, he would call the neurologist and I would start IVIG that night. I used to work at that hospital and I have NEVER seen two Drs from different places work together like that for a patient. This dr drove back to his office and kept it open for me. During one part of the test he asked me if I felt something. I told him that I didn’t feel anything. So there it was concrete evidence that I wasn’t nuts. I literally felt like I was going crazy because all of the tests were negative. I almost cried. So late that night my IVIG was started. I ended up missing a dose because we lost iv access. I can only have needles in one arm . Even the supervisor from the trauma ICU couldn’t get one in with a vein finder . When all was said and done, I was stuck more than 20 times during my stay for IV’s in my arm. The PICC team was away for the weekend so they went for the jugular 3 times on the one side and couldn’t get it in. They finally got the other side. Two places I never wanted an IV, neck and groin. Well , I ended up being paralyzed from the thighs down and my arms were getting so weak that I couldn’t hold my phone up to my ear or push a table away. So after the third round of IVIG, they decided on plasmapheresis. You need a bigger access for that , like dialysis patients get, so the only place left was the groin. He was good enough to put it a few inches down so They could sit me up and it wouldn’t be in the fold of my leg and groin. I have never been so cold in my entire life as I was during plasmapheresis. Then again, they are sucking all of your blood out. Somewhere in the midst of the treatment I was transferred to icu. I vaguely remember freaking out because the respiratory therapist apologized because my numbers were low and that they were found to intubate me. I couldn’t cough or clear my throat. One of the numbers was just high enough, so they did keep me there for three days, but I breathed on my own. I also had urinary retention and Coukd not move my bowels. I ended up with 6 days of plasmapheresis, I think, then another 5 or 6 of IVIG on top. I was able to urinate on my own before I was discharged but an autoimmune disease, that hadn’t bothered me in years, interstitial cystitis, ended up flaring. I’ve had trouble ever since. I also took some meds for constipation and was very sick for a few days. I couldn’t tell when I needed to go except for stomach cramps. Thank goodness they always got the bedpan to me in time. I still could not stand or move my legs. I was also dropped by a nurse in icu who tried to make me stand, but I’m not even going there. I wasn’t going to say anything until my injury was very apparent and hurt. Then she lied. Ugh! So I was discharged after 20 days and went to acute rehab for another 21. It was still maybe a week and a half until I actually stood with assistance. It was really the first time I had seen myself in a mirror in a long time my muscles were atrophied and I was down about 90 lbs since February- this was August. I looked really bad. By the time I left , I could go about 20 ft in a walker but it was small shuffling steps using my hips to move my legs. I could only use smooth surfaces. I went to another facility for sub acute rehab. They ended up giving me a private room because I took several naps a day. I went there because I used to be a supervisor there and knew they would take good care of me. They let me go out a few times on short visits . I went home to see my dogs and just cried. As I was approaching 60 days of being institualized , I asked my physical therapists when I could go home. They could’ve kept me longer , but they recommended that I go and the next day the insurance company said I had a day to leave . Gotta love them. I could shuffle over thin carpet with the walker and stand for a few minutes. I could go down steps bu shuffling my foot forward and letting it drop to the next step. To get up I need someone to physically place my foot on the step. I still have to do it that way. So that was Sept 26. It took a lot of adjustments at home and to get set up with physical therapy and all the other crazy stuff that goes with all of this. My arms had gotten much stronger by the time I left the first rehab center. By the end of November, both hands/ arms started loosing sensation and had numbness and tingling just how my legs had started before. It gradually got worse. There was a bit of improvement with the legs, enough for them to continue physical therapy, but not enough for my dr to be happy. He started talking about the possibility of CIDP and maybe steroids. I had a lot of medical issues and said that I wasn’t comfortable with all of the side effects so he mentioned IVIG and I reminded him how poor my veins were and suggested a port. We agreed to wait a bit and he sent me for another EMG/ NCV at Jefderson in Philadelphia. When I went there, the dr did the test very fast because he had some thing he had to take care of. I didnt get much of an explanation of anything. I Went to my neurologist again, he didn’t Have the results. He diagnosed me with CIDP. He ordered the port to be implanted and a loading dose of IVIG for 5 days. I held off a bit because I had a last minute vacation planned. Within 5 days of me being back, I had the port put in and a few days later, the IVIG. I had lost more weight and was down to 103 lbs by then. I had really bad headaches and felt like I had the flu. My body aches all over. After that, I felt like I had a bit more energy then normal for about two weeks. Then I felt crapou again. I saw my dr. He wanted me to go to the neuromuscular clinic at Jefferson because he didn’t know what was wrong with me and that he didn’t know if I even had GBS. He said my EMG was perfectly normal. He still gave me a six month prescription for IVIG. It took me a long time to get an appointment because you can’t just make an appointment. Your dr has to refer you, send records, and write a letter why they are referring you. So it took me three times calling and leaving messages. Finally , I refused to be transferred and told them to type the request in my file. Within a few days , I got a phone call saying it was done. Mind you, it takes a lot of energy for me to do this. I also get a lot of brain fog on top of it , so I have a lot of time remembering to do these things anyway. So I called the office and they had an opening within 6 weeks. They would send me papers to fill out. My dr was supposed to send all the records he had over. I called a week before. NOTHING was sent. I had to make some calls and the day before I traveled the 50 miles to the hospital and rehab to sign authorization to send some. So my symptoms are essentially the same as they were marked off for that day: fatigue, weakness, altered sensation, nerve pain, cramping, spasms, absent reflexes ( although she got a veery weak response on one side) unable to regulate body temperature, my feet and legs are often mottled and discoled, low blood pressure usualy 80s/50s or 90s/ 60s and Thsts with medicine to raise my blood pressure, dizziness, brain fog, blurry vision at times, constipation ( I am unable to sense when I have to have a bm. Sometimes I have a stomachache) My uterus and bladder prolapsed 12 years ago and held up until last summer’s episode of GBS. My dr that takes care of this thinks It happened when I lost muscle tone. I Have a rectocele , which is a herniated rectum through the vagina. I thought that it was causing it, but my dr said it was very small and it is more likely due to autonomic nervous system problems. I can stand for longer periods and try to do light house keeping like wiping off countertops or a few dishes. I use a walker for part of the day when I am at home. I still shuffle, but I don’t depend on my arms as much to push down. I am a little faster and can shuffle/ slide longer distances. Towards the end of the afternoon I get really fatigued, unless I take a nap, and need the wheelchair for the rest of the night . About 3 1/2 weeks after my IVIG, I slow down and have more fatigue and less strength. We had to push it back a 5 days and I could barely function. I was so miserable. So the Dr was nice but very young looking. I had 3 EMGs with me an old one which was normal, the one that showed demyelination, and the one that I had in January which was NOT normal , as my dr said, but showed some healing. She said, ” You have all the clinical signs of CIDP, however, I think it’s just a continuation of GBS. I am going to recommend that they wean you off of the IVIG and you get that port out.” I asked her if it was a continuation of GBS, hen why the new symptoms? She dodged the question. I asked why my legs and feet were cold and mottled. She said it was because I didn’t move them. I also asked why do I feel worse right before the IVIG and then am starting to feel better after the side effects. She couldn’t answer that either. She did say that she thinks it will probably be another year until I am better and she’s doubtful if I could go back to nursing but maybe. Wednesday, my Dr’s medical assistant left a message on my voicemail that he was discontinuing my IVIG. I have an appointment after my IVIG is due. There are no earlier ones. I have an appointment with my family dr in the am. I guess I should sleep . I’m so scared. Something has finally made me d eel better . Now it’s gone.