This past year has been crazy for my family and I. I became pregnant, had a baby, bought a house, packed and moved out of state, and endured Guillain Barre. After having a wonderful natural birth experience, I started having a lot of postpartum issues. I have a lot of feelings of frustration when looking back at my time with Guillain Barre. I also realize that this experience, along with becoming a mom, has made me stronger than I could ever imagine. Most women deal with some sort of postpartum issue. My postpartum issue just happened to be extremely rare and very serious. My guillain barre is milder than most of the stories you hear about. However, I do not think mild is an appropriate term for something that takes over every part of your body. The reason I am writing this is, is mainly therapy for myself. I really am not wanting pity, or to scare anyone (it's extremely rare, I'm just the special one who gets to deal with it haha) I just want to share a positive story of a strong mama bear who didn’t give up.
About a week after giving birth to my baby my symptoms started appearing, this was at the end of August 2017 ( I am listing my symptoms at bottom of my story). I had progressive symptoms until 5 weeks postpartum and then they started to plateau. People I talked to about my symptoms, they made it seem as though they were just postpartum or a hormonal issue and that these issues would go away. I went to the doctors a few times, and all they did was bloodwork and referred me to a rheumatologist (which had a 3 month wait until appointment). My bloodwork was excellent except for a positive ANA. Vitamin D, Vitamin b12, Sed Rate, C-Reactive protein, metabolic panel, CBC, and rheumatoid factor were all great or normal numbers.The only abnormal thing in my bloodwork was a positive ANA which is why they suggested rheumatologist.
First trip to get bloowork
I ended up developing mastitis from breastfeeding and taking a round of antibiotics, which sent my body back into a steady decline. After the infection and how fast I was declining I kept researching my symptoms. Guillain Barre was the one thing that seemed to fit all of my symptoms and type of onset. A strange symptom that sets Guillain Barre apart from other neuromuscular diseases is absence or diminished reflexes. Learning about the lack of reflexes being a symptom seemed to be an easy thing to check at home, since none of the doctors had done this at my previous appointments. My husband checked my patellar (knee) reflex multiple times. The result was no movement, or no reflex. We tried multiple times, and even tested his reflex. He had a strong reflex and I never got anything. It was in that moment that I decided I needed to press the doctors for further answers as I was still declining and I had something to make the doctors look harder than they were. Sure enough, this appointment they were more concerned. They did multiple neurological tests testing balance, strength, and reflexes. With these results they referred me urgently to a neurologist. To be honest, it still upsets me they did none of this at my first visit a month before this, because it could have been handled then.
The neurologist I was referred to was pretty cold and reserved in bedside manner. He did neurological tests, testing balance, strength, how my sensations were, how I walked, and reviewed my symptoms. He suggested I may have Myasthenia Gravis or Guillain Barre, I was to come back in 2 days for an EMG. I had the EMG which was very uncomfortable. Imagine being stuck with a cattle prod dozens of times all over your arms and legs… then increasing the voltage. Neurologist read the results as CIDP, the chronic form of Guillain Barre… though he did not take into account my plateau period and the infection and round of antibiotics I had that preceded my decline. He ordered a pre authorization for IVIG and sent me on my way. I honestly think I should have been admitted to hospital for monitoring and for immediate treatment, but that did not happen ( I had dysautonomia, as to why I think I needed to be monitored).
never received treatment, no steroids, no liquid gold( ivig), and no pain medication. The only thing I took was ibuprofen, which does absolutely nothing for nerve related pain. I did not receive treatment for a few reasons: 1. Was not diagnosed until almost 3 months postpartum 2. Doctors didn’t admit me to hospital 3. Preauthorization for IVIG takes a long time (at least for me) and I was in the middle of doing continuation of coverage (COBRA insurance).
where you would find me most of the time, on the couch.
I would have done almost anything for any sort of treatment. Seriously, quite a few times I cried on my husband because no one would help me. Insurance denied me treatment because I was in the middle of continuing coverage (side note: my COBRA experience has been horrible). This was December and we were moving to Texas. We were moving and we were changing insurance to my husbands work in January, so I got an appointment in January for a Texas Neurologist and just hoped I didn't keep getting worse, because I literally had nothing to help me. November and most of December were absolutely terrible. My symptoms were at the worst and I just had to keep living, because what else are you supposed to do? A few days after Christmas I started getting better. Just out of nowhere, improvement. I call it my Christmas Miracle. No treatment or anything just spontaneous recovery.
I saw my new neurologist in January, and she was absolutely fascinated by my recovery. At this appointment all of my reflexes were back except for ankles and my wrists were still a little reduced (left side a little worse than right side) My balance was so much better. Physically I was probably 90% better than I had been. My case is unusual in the fact I never received treatment and I got better. CIDP patients do not get better without treatment. There are relapsing remitting forms of CIDP, but it is relapsing and remitting due to treatment or time lapse between treatment. My neurologist suggested it was a sub-acute form of GBS, meaning in between Guillain Barre and CIDP. She wanted to rule out other conditions such as Multiple Sclerosis, although she thought this was an extremely small chance due to how and where symptoms were presenting. So she ordered an MRI of brain and spine as well as another EMG. MRI came back clean. A couple weeks later I had the second EMG. This time around the EMG was even more uncomfortable, which should be a good sign (more sensation and feeling in legs). However, my EMG results did not show much change compared to my EMG in November.
From the EMG results you can diagnose me as CIDP she explained but because of the way I am healing and recovering she thinks it is more of a subtype or subacute form. Basically my nerves were and still are super damaged in my lower legs and ankles. She gave me options as if I wanted to do treatment of IVIG, steroids or not do anything. She also said doing a lumbar puncture (spinal tap) would be helpful to see if proteins are elevated. I chose not to do anything. Stress and lack of sleep seem to be the things that bring out my residual symptoms the most. I feel a lumbar puncture would really stress my body. The fact is I know my body is healing. I know my body is not in an active state of an autoimmune attack. I do not need an expensive, painful, stressful test to tell me that. If my body gets worse I will absolutely get a spinal tap, if they need it. I also refused to get IVIG or steroids at this point. IVIG works to stop the bodies immune system from attacking its own tissues. But my immune system is not attacking its own tissues, I am in a state of remission. There is no way to tell if IVIG would help or not at this point, according to my neurologist. I am 90-95% better and each week I notice improvements. IVIG is extremely expensive and time consuming, it is nicknamed liquid gold in the GBS/ CIDP community. I’m not refusing treatment because I’m some wacko who doesn’t like medicine… I mean I do question what I put in my body but that is not the reason for not getting IVIG. I honestly feel 95% better and my body is healing itself without treatment, I do not feel it would make a significant difference at this moment.
It’s currently late April 2018 as I write this post. I am 95% + better I would say. I am continuing to notice improvements and feeling better. My neurologist is moving out of state so I am getting set up with a neurologist at UT Southwestern, which is a Center of Excellence for GBS/ CIDP. Although this experience was AWFUL, I do think it changed me for the better. I realize I am stronger than I knew I was. I feel like I have second chance at life. I am trying to catch up on the experiences and time lost with my 7 month old daughter, things I couldn’t do with her before we are now doing all the time. My favorite thing to come of this is that I now know what it is like to have a spouse who loves you unconditionally through “sickness and health”. And that love I am lucky to share is something better than a Nicholas Sparks book. And now I will conclude with my cheesy but true words of advice. Love is what matters. Enjoy and respect your body, you never know what can happen. Attitude can make or break you. Try and stay positive even when it feels like a lost cause. Be your own advocate, because no one else will.
- me now
Symptoms at onset:
Extreme back pain couldn’t even get comfortable in bed. Extreme muscle pain throughout body, felt like knots in muscles. The pain was from my feet all the way to my face. It was painful if touched but not if resting though. A hug hurt, sitting on a hard chair hurt, sitting on a toilet hurt, smashing garlic hurt, yawning hurt…. You get the picture. My legs felt weighted in cement, doing anything involving my legs felt like a chore. I felt like I had just run a half marathon or marathon every day. My body became stiff and lost flexibility. I was not longer able to touch my toes, in fact I could barely reach past my knees. The lack of flexibility affected pretty much everywhere. In fact, I remember having to smoosh my sandwiches so they would be a little thinner because my jaw was so stiff. I had difficulty walking, I could not go far or fast. Stairs were very difficult. It was as if my brain wasn’t communicating to my feet what to do. I could not run and couldn’t jump. I had shortness of breath if I did pretty much any activity. I had trouble getting up from sitting. I would have to use my hands to push my body off a chair or couch. It hurt so bad to get on and off the floor. I was hardly able to have tummy time with my new baby. I could not stand on tiptoes and could not put pants on without sitting on bed or holding on to something. I also would have the feeling that my feet were burning or on fire at night or after shower. I started having tingling/ feeling like my big toes were asleep. This was just the beginning.
Symptoms at peak:
The one thing that went away was the extreme back pain, everything else got worse. I still had pain everywhere. In addition to my legs feeling heavy my whole body felt like it was weighed in cement… doing anything was hard. Feeding our dog was a hard task for me, because bending over to get her food bowl and fill it up then put it back on the ground was too painful and challenging. I still did most everyday things… it just was extremely painful and slow. The only thing I really gave up on doing was taking the trash outside or going down to the basement. Instead of just my toes being tingly/ numb, it was now my entire foot. Not only was my entire foot tingly/ numb my whole leg from my calve to my hip was extremely reduced sensation, couldn’t feel as much and it felt so strange. When I shaved my legs it felt as though I was peeling the skin off my body. Occasionally I would have numbness and lack of sensation in my abdomen, this would come and go, not for long periods but happening everyday or every other day. My fingers wrists would get tingly and numb, mostly affecting thumb and index finger on both hands. My handwriting started getting smaller and having issues with fine movements using my hands. If I became tired or body was strained (which didn’t take much) my arms/ hands would start to have a slight shake. I had shots of electricity flow through my arms and hands every so often, this was one of my least favorite symptoms. Swallowing large gulps of water became difficult, thankfully it was only if I was really drinking water too fast and did not affect my eating and drinking more than that. I had shortness of breath with pretty much any activity. I feel I had blood pressure fluctuations when getting up too quickly…. But I do not have any way to show this. If I went upstairs I hand to pull my body up with my arms, if there was no hand rail I would fall. In fact I fell twice going up/ down different stairs. My blood pressure and heart rate became significantly elevated compared to my normal: my normal bp 110/60 hr 55-60 : 11/13/17 bp 130/90 hr 90. Everything was hard to do, especially getting up and down from floor or chairs. I had lack of reflexes in legs and extremely reduced reflexes in arms. Walking was very hard and hills or long distances really didn’t happen. I had a wide based gait to compensate for balance. I failed the romberg tested, couldn’t stand on one foot, felt off balance when closing eyes, anything to do with balance I would fail. I still had feeling of feet burning probably more frequently than before. I still could not run or jump. I could not stand or walk on tiptoes… which was really annoying because I could not turn our light or fan on or off.
Symptoms currently:
Most of my symptoms are gone. I have pretty much normal sensations everywhere. My big toes are still a little reduced sensation but nothing like they were. I still have a little muscle pain in wrists and calves but it is not anywhere near what it was. I occasionally feel electric shocks in my feet/ legs (nerves healing). Hot and cold temperature effect my feet still, feet become red and tingly if too hot. If I am really tired or sick, I will feel slightly tingly in my fingers and toes (residual nerve damage).I still have no reflexes in ankles but knees and arms are normal. My flexibility is coming back, almost normal. My body does not feel weighted down. No numbness anywhere on body. I do not have difficulty swallowing. I do not have to use handrail when climbing stairs. I have no shortness of breath. I can get up and down from floor without using my hands and it is not painful. I can walk normally with no wide based gait. I can walk up hills and go long distances and even speed walk. I am able to run. I can jump. I can even do burpees. My balance is normal. I can be on the floor with my baby for tummy time. I can walk my dog without fear of falling over due to balance. Basically I now feel like myself.
Trigger/ Cause: TDAP or Birth of daughter
Location: Kansas City for most of GBS, just moved back to Plano, Texas
Age of Diagnosis: 27
Date Diagnosed: November 15th 2017, symptoms started end of August beginning of September.
Residuals: Occasional tingling in toes and fingers (only if extremely tired or sick), hot and cold effect my feet, no reflexes in ankles.
Instagram: jennymariecastaneda
Variant: none that I know of
Treatment: none
Symptoms: listed in document
