How Much Can One Spirit Take?

This blog entry is intended to update friends, family, blog followers, and the general public about my recent health issues. I prefer to try and make my blog about different life experiences and topics rather than about my day to day medical sagas, but I received some excellent feedback last week about my blog entry entitled: From Medical Crisis to Inspiration. I was told that it was helpful to have a clear understanding of what is going on with me and I found it helpful because it fielded a lot of questions and concerns at a time when my energy and time is precious to me. Not that I don’t want to talk about it in person, by e-mail, or on the phone; I do. But I also like to talk about other things going on in the world as well!

I went to see a neurologist yesterday afternoon because of some scary symptoms I have been having since maybe around Christmas/New Year’s. They included sudden and severe pain in my entire legs and feet that felt both muscular and like someone was stabbing the bottoms of my feet. Very different than my typical joint pain from the Sjogren’s syndrome. It was getting difficult to walk Molly and even the touch of the bed sheet on my feet could feel like agony. Burning, numbness, and tingling in my legs and feet were constant. I went to see my primary care doctor within 2 days of the symptoms starting and my small prednisone dose (steroid) that I was already on for the Sjogren’s was drastically increased. It was thought that I had neurological involvement from the Sjogren’s which seemed like a perfectly logical explanation to me. That’s the thing about having an autoimmune disorder though, everyone blames that first, including myself.

I was about a week away from seeing my rheumatologist who treats the Sjogren’s and although the steroids were helping the pain a bit, I started to have difficulty walking in regards to coordination and balance. I felt like I was drunk without the fun of actually being drunk. Severe weakness took over my lower half of my body and even getting up off the couch was an event. Then the weakness began in my arms and upper body and all of a sudden, driving, showering, and household chores became almost impossible. I was spending a lot of time in bed and began to wonder if I was just depressed from the steroids. But my body just did not feel right.

I saw my rheumatologist who ordered a brain MRI (which was negative), blood work and started me on IV steroid infusions since it appeared that the prednisone (oral steroid) was having some positive effect. She considered having me see a neurologist but wanted to do the MRI and one steroid infusion first. I got significantly better with my walking and pain after the first infusion so she scheduled three more and referred me to a neurologist as I was still having tremors in my arms and some weird stuff with reversing my letters and words when I typed and wrote.

I seemed to be improving with the next two steroid infusions neurologically but ran into complications with heart palpitations and two pulmonary embolism (potentially life threatening blood clots in the lungs). Things were getting complicated fast yet again. This past weekend I became very discouraged because despite tolerating my steroid infusion better, my hand tremors started to make it difficult to even get a fork to my mouth without slobbering food on my shirt. Utterly ridiculous. I also appeared to really be struggling with my energy and weakness at times although not as bad as weeks prior. But the good news was I was seeing the neurologist and it might be helpful for her to see me when I was symptomatic.

Off to the neurologist yesterday. I hate neurologists. I’m sorry but it is true. As a nurse and as a patient, I have never had a good experience with one. Until yesterday. Dr. Evelyn Gleeson at St. Francis Neurology is hands down one of the best doctors I have ever encountered in my life; and I have encountered many. She is not only brilliant, but compassionate as well. Immediately I was able to build a rapport with her.

My neurological exam, although not horrible, did turn up some interesting symptoms and a diagnosis that floored both me and my mother.

To begin with, she does think there is a possibility of a Sjogren’s syndrome related neurological issue but does not think that was what happened to me over the past six weeks. She is also testing me for Lyme Disease and some vitamin deficiencies to cover some other diagnoses but then she hit me with what she really thought was going on.

She looked me straight in the eye and said she thought I had Guillain-Barre syndrome.

Excellent information and resource for Guillain-Barre if you are interested:  http://www.jsmarcussen.com/gbs/uk/overview.htm

And another: http://www.guillainbarresyndrome.net/

Neurology was never my strong suit as a nurse but what I did remember from my days as a pediatric nurse was kids with Guillain-Barre being transferred from my floor from the ICU after being on a ventilator due to paralysis of their entire body. Many recovered fully, some did not, some needed months of rehabilitation. Some never made it at all.

What….the…fuck?    (I get to say that this week, sorry).

So I tell her that how can that be? I got better with steroids for a while. She then went on to explain that Guillain-Barre (GB), which is an autoimmune disease, can be helped with two other treatments called IVIG or plasmaphoresis if it is treated in its acute stages, usually the first two weeks of symptoms.  However first of all, I missed THAT window of opportunity (we are guessing I am at about week six) and second, GB just has to run its course, usually being hospitalized with supportive care in order to keep the paralysis (or milder paralysis as in my case) from paralyzing your necessary organs that keep you alive, like your lungs. Steroids do not typically treat GB and it was most likely coincidence that the GB ran its course as it appeared the steroids were working.

Listening to her, doing some research, and looking back, I think she is right.The first page I pulled up on Google last night and there I was, all in black and white…my last six weeks or so. All the neurological signs, the heat palpitations, the blood clots, the choking episode I blew off on Super Bowl Sunday thinking that the gluten-free pizza crust was too dry for me, the subtle difficulties I was having with swallowing….all likely GB related.

So where does this leave me? I have to go for an EMG which will test my nerves and any damage from the GB and to check for Sjogren’s related nerve issue which is still a possibility. An MRI of my neck and spinal cord as it appears there is concern about damage in that area which would account for my continued tremors and upper body weakness. Physical therapy for both the neurological issues and pulmonary embolism to help regain as much of my previous self as possible. Recovery from GB varies widely. There are different statistics wherever you look. Some say weeks, some say years, some people always have a deficit of some sort.

I say screw the statistics…..

As I have tried to process all of this information since leaving her office yesterday, I have so many thoughts. My first was to be angry at the fact that I DID seek out medical care when I first became so symptomatic and despite the fact that I was taken seriously, the diagnosis was missed. Maybe if I had gone to an ER instead of my regular doctors, maybe if I insisted on seeing a neurologist sooner. Maybe this, maybe that. Fact is, GB is a rare illness and it is not the first diagnosis you jump to when a patient presents with neurological signs, especially when they seem to improve on steroids.

More than being angry, I am grateful. I feel like a hand has reached out to me and brought me back from the brink…yet again. Despite the fact that I do not understand why these things keep happening to me, I am very well aware that in the past nine days, my outcomes could have been so much different. Despite being emotionally overwhelmed, I am humbled to be here.

Even though I have experienced a lot of self growth over the past two years or so, my life has gone through a significant, often painful, transition over these past six weeks in regards to my priorities, my personal life, and my relationships. Some people and situations I thought were certain and steadfast have turned out not to be while at other times, I have been taken aback by the generosity and compassion of people who were once strangers. I am learning the difference between friend and acquaintance. I am learning how to be less judgemental; despite the fact that I didn’t think I was. Is this where my medical journey is supposed to take me? And is it supposed to be this difficult? I don’t know.

What I do now for certain is that today is Wednesday, February 22, 2012. The sun is shining and I am certain that I am loved. I have necessary tasks I must take care of today to get further down this road. I must eat well, take medication, make appointments, relax, read, and heal. Oh yeah, and shower.

That is enough for today.

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