My beautiful daughter Sara has had a typical normal healthy life, until January of this year, when she began getting some intense, inexplicable pain in her hands and feet. The symptoms were worse at night, and eased up in the day, then got more and more frequent to the point of being pretty much constant. She has been completely debilitated, unable to use her hands and often unable to walk due to the pain in her feet. We have sought the assistance of many doctors here in Austin, underwent multiple tests, all coming back negative. After 2 ER visits and multiple referrals here in Austin, we ended up seeking care in Plano, where Sara was hospitalized for a week as the symptoms progressed. The team of doctors have finally figured out what is wrong, and it is a triple whammy of Small Fiber Peripheral Neuropathy, Erythromelalgia, and Guillain-Barre Syndrome. Since none of the symptoms were presented in the typical fashion, and add in the complication of the presence of all three, this was why it took so long to get a diagnosis.
I am sure I need not explain how awful health insurance is these days, we DO have insurance, however, apparently we have reached the maximum on the medications for the year. The medication for ONE TREATMENT for the GBS is $12,000. I don't know if we will need more than one or not, but it is urgent to get treatment as soon as possible to avoid further nerve damage and speed the recovery.
Sara has been completely debilitated by this, and unable to work since late January. Just her regular bills, car payments, etc, really add up, and she has had to utilize most of her savings already. So far, the medical bills and amounts due that were not covered by insurance are well over $7000. She has literally seen over 20 doctors, had 4 ER visits, and a hospitalization. She has been on a pharmacy of meds, with many being completely ineffective. She is on some now that are controlling the pain, however, they are not a long term viable option, she needs the treatment to heal her body, not just mask the symptoms. (Even those meds are nearly $1000/month).
We are looking into new insurance, however, it takes time, and that is something we just do not have at the moment. So I am coming to you, humbly asking for any assistance you can give.
Please also pray for a complete healing, and please share.
Below is a post from her describing what she has been going through since January:
The time has FINALLY come.
After 4 months of having zero answers, almost every night being a sleepless night, unimaginable pain, not being able to care for myself and being completely dependent on others for everything (and I do mean everything), medications that did not even touch my pain and medications that caused me to hallucinate. I finally have an answer.
My diagnosis is Erythromelalgia, small fiber neuropathy, and suspicion of Guillain Barré.
If you care to know what I went through, this is part of my experience. I’ll explain what my diagnosis is near the end of this and include websites if you wanted to do some research for yourself. I haven’t updated y’all in awhile, so here’s one big fat update.
There was a point in time where I would cry every night and every day just at the sight of someone I loved; I thought I was a failure to them. I was embarrassed for anyone to look at me, to help me walk, to bathe me, to feed me, I simply couldn’t do anything myself anymore, and it was so dehumanizing. I constantly apologized to my loved ones for being this way. I couldn’t have blankets touch my skin without my skin breaking and then having green sores. I couldn’t sleep on a bed, I slept on the couch and often times the floor. The only thing that could help was soaking my hands and feet in cold water, my hands and feet were swollen, red, and burning hot! I’d be so sleepless that soaking my feet in the bath tub would give me enough relief for me to pass out from sleep deprivation multiple times. I remember hitting my head, waking up cold with my face in the water, and falling backwards and hitting the tile floor. It was scary. However, soaking them in water would cause my skin to chap and burn. Even the most sensitive lotion burned my skin, like rubbing salt into the wound. Damned if I do, damned if I don’t. I could not wear regular shoes, I could not wear long sleeves as it rubbed my wrists raw, I wore loose pajamas every day that were short enough to not touch my ankles or my wrists. When I walked, my feet turned beet red and I swear it felt like tiny shards of glass were on the bottoms of my feet and pulsed through my veins. I moved to a walker, eventually that was too much for my hands and I was dependent on a wheelchair. I was in the hospital for 5 days due to urine retention and they had thought my kidneys were shutting down and my resting heart rate was 90-100 bpm, standing up it would spike to 140 bpm, my heart rate to this day is still in the 90-100 when I’m at rest. Even in the hospital after SO MANY TESTS, I had no answers. They were so certain that it was lymes disease. I had a doctor tell me I was psychosomatic, meaning it’s made up all in my head and I believe it enough that it becomes a reality. I never thought this kind of pain was REAL, how could I ever make up something this evil? Something that woke me up from severe pain? Something that disabled me to feed myself, clothe myself, wash myself? To be 3 hours away from home and to travel an hour 3 times a week just to see these doctors? I felt defeated. The pain proceeded to get worse, I had what felt like electric shocks that would radiate up my arms and legs suddenly and violently. I honestly thought this would never end, and that this was my life now.
I prayed every day for an answer. I prayed every day for someone to tell me what I did wrong to deserve this hell on earth. I prayed and apologized for whatever I did to get something this awful. I was thinking of extremes, like maybe I’d need my hands and feet amputated. I had so many people praying for me, so many people that drove for hours to visit me that I’m SO GRATEFUL FOR. So many friends and family that brought me gifts to lift up my spirits, and I can’t tell you how happy it made me to feel like people cared about me, and I’m forever grateful for that. Thankfully, I found a pain management doctor that gave me Nucenta and slowly but surely, I was able to do things by myself again. Next, I found another neurologist (my fifth one), she made me walk on my heels and tiptoes when I came in on a wheelchair. This is part of the GB test, which I had passed but it was SO PAINFUL. Nana and I drove back home an hour away in the car and I just started screaming. Walking like that had agitated my nerves and muscles so bad that I scratched my skin OFF. It was so itchy. My calf muscles were incredibly sore, I felt more weak after seeing this doctor. It was another week of pain and extremely agitated nerves. We saw this doctor again, and she performed skin biopsies on me, and decided to do another EMG on me, and with that test, she found significant nerve damage. I never smiled so big in my life to have someone tell me bad news. She then told me that my test results would be back Tuesday (today). Currently my toes and fingers are usually numb and tingly, and my toes visibly twitch. It’s evident that I have nerve damage. This is all I can remember at this time since I blocked a lot of what happened out, or I simply don’t remember because I was so drugged up.
So, to shorten it up, it’s very likely that I went through Guillain-Barré. GBS is a condition where the immune system attacks the nervous system, damaging the myelin sheath and causing paralysis and numbness due to the nerves not being able to send signals to the brain. I went through this without proper treatment and medication... so I felt every single thing happening it my body and it sucked...now I’m just dealing with the damage. It wasn’t found until now even though I thought it was this the entire time. Doctors didn’t listen to me, and they skipped over Guillain-Barré because some of my symptoms were atypical. Guillain-Barré is a very rare syndrome, 20,000 US Americans are diagnosed yearly. There isn’t a definite reason why this condition happens, there are a lot of hypotheses. This condition is not curable, but it’s treatable...however the likelihood of it striking again is 1-3% or 2-5% out of those 20,000. Let’s hope I stay out of those percentages
Erythromelalgia is also something that is very rare! And not curable! Yay me, two for one! This primarily affects the feet and hands. It is characterized by intense, burning pain of affected extremities, severe redness, and increased skin temperature that may be episodic or almost continuous in nature. This is fairly new in the medical field, and the only thing known to help this is aspirin. This condition could be isolated, or secondary to an underlying problem. There isn’t a lot of research done on this yet, so the cause is unknown and it is unclear if it happens randomly or it it’s hereditary.
Small fiber neuropathy is a condition that causes sensory symptoms such as pain, burning, and tingling. These symptoms often start in the feet and progress up the rest of the body. WHAMMY NUMBER 3. Many cases of small fiber neuropathy will remain idiopathic, or will still require treatment of pain. I need to do some more research on this, as I’ve been pretty focused on the Erythromelalgia and Guillain Barré.
All I wanted during this was a hug, I wanted to be able to hug someone and have some sort of human touch. I wanted my parents to hold me. I wanted my nana and papa to hug me. No one could touch me without hurting me. I pray that you never experience sitting in a chair not being able to sit yourself up, watching your family stare at you in sadness and hopelessness... can’t play on your phone as a distraction because it hurts. Watching tv gets so monotonous and boring... it’s just really sad. I’ve memorized commercials and episodes of game shows. I pray and hope this never happens to you, nerve pain is on another level. I went through this basically without medication that could help me, I’ll never complain about being in pain again because nothing could compare to this. I feel like I can do anything now.
My message to you is to get up off the couch! Get out of bed! You have the rest of your life to sit down, but there will be a point in everyone’s life where an accident could happen or an illness could strike that could leave you bound to a bed. Get up and go outside, ride a bike, go hiking, run, go out even if you feel like staying in bed all day. You have no idea how big of a privilege walking on your own is. Thank you everyone who has reached out to me, sent me gifts, FaceTimed me to check up on me, and to all of my family members and friends that helped me through easily the darkest times of my life. I wouldn’t have been able to do it if I didn’t have you. my treatment starts soon, and within no time I’ll be home! I’ve attached some pictures in this post to show my progress. The first pic will be from January, last pic will be from today except the last two vids. I don’t have many pictures because I couldn’t even pick up my phone. It was heavy to me and my hands were very weak... but I wanted to document what I could. I love you guys.
EDIT: I’d like to specifically thank my bosses Kristen and Erin. My first worry was losing my job because if y’all know me at all, you know how much I love my job and the animal friends that show up there. Instead of losing my job, everyone pitched it to give me a gift and a nice card. It was the nicest thing, and I never expected it. So so so incredibly grateful for my coworkers and my bosses. I truly am blessed.
I know I’ve said it before, but I’ll say it again. Thank you to all of my friends for FaceTiming me and sending funny memes. I don’t think I can thank you enough. If you don’t think this applies to you and yet you have called me, texted me, surprised me with a gift in the mail or a delivery, visited me in the hospital or at my nana and papa’s house, spent money on me in any way, FaceTimed me, or even freaking emailed me... this applies to you. You are special to me, and without your kindness, this would have been a million times harder. There are way too many of you to tag and I don’t want to plaster your Facebook wall with this, but you know who you are if you’ve read this far.
Thank you Dad for visiting almost every weekday to eat lunch with me. Thank you Nana for driving an hour once to three times a week for my doctors appointments and for pushing me around in a wheel chair, and thank you mom, bonus mom, Jillian, and Katy for going with me to as many appointments as you could, helping me put my hair up, helping me clean myself, feed myself, and helping me walk and do just about everything else. Thank you Jennifer for visiting and bringing me the stuffed animal dachshund, who ended up being very useful at the hospital for something to bite down on for pain. Thank you for always bringing me food and something to snack on.
Thank you thank you thank you EVERYONE. I’ve always been told that we have a guardian angel, lucky for me I have hundreds. I don’t know how I’ll ever repay you, but I promise I will. I love you all.