I think I’ve gotten that question at least 100 times in the last 4 weeks…no joke. The other question many have asked is “how are you feeling?”. Now that I have this handy little blog, I thought I would write it all in one place, for simplicity’s sake. Here goes!
This crazy journey all started back at the end of September, with numbness and tingling in my feet at night. The feeling was always gone after an hour of being awake each morning, so I didn’t think much of it. After a week or so, the feeling moved into my hands as well, and became constant rather than only at night. Thus began the doctor’s visits.
After having over 10 vials of blood drawn, my primary care had no idea what was wrong. Every test that was run came back negative or normal. During the 2 weeks of visits with my primary care, I also started noticing that life was getting harder to do…going up the stairs, lifting my toddler and even my purse were becoming a challenge. Now I’m officially concerned, but still optimistic that the doctor will figure it out; we just have to run the right test. I’m fairly certain this was also around the time of my first ER trip, for IV fluids, in the hopes that this was just a bad case of dehydration. No such luck; the fluids had no effect.
Each time I had my blood drawn, there were at least two days of waiting for the phone to ring. When the tests came back negative, more were ordered, and the waiting process began again. During all of this, my muscle weakness continued to get worse; my walk became an awkward limp, and stairs became almost impossible. I also realized my core was getting weak because I could no longer roll myself over in bed without a lot of effort. Cue the fear.
After he felt that he had done all he could, my primary care physician referred me to a Rhumatologist. More waiting. At this point, I was so weak that I could no longer care for E, so we started staying with family and getting rides to all of my appointments. I started doing my own research trying to figure out what could be wrong with me, After several hours, I came across CIDP. It fit perfectly.
The Rhumatologist completed their evaluation, determined whatever I had was a neurological issue, and referred me to a neurologist. More waiting to get an appointment.
The neurologist, Dr. S, only spent 10 minutes with me before he came up with a tentative diagnosis of Guillain Barre Syndrome. He ordered an EMG, which he said he had an opening for that afternoon in his office. Progress! Hope. Waiting.
The EMG/NCV test was performed (my first painful medical test of many), but the results were normal. Wait. What?
Disappointment. Dr. S said he “would have put money” on that being the correct diagnosis, apologized, and referred me to the ER for a spinal tap. The spinal tap is a more conclusive way to diagnose GBS when other tests have been normal.
I spent the next three days at a very big well known hospital, had countless blood tests run, spent hours talking to psych (are you SURE this isn’t just stress?), and was discharged with no diagnosis. Their neurologist only saw me once, was sure this wasn’t GBS, and never came back. The psychologist asked me what I thought was wrong, and I said CIDP. Still no neurologist. A spinal tap (or any other advance testing) was never done. I left feeling worn down, exhausted, and more frustrated than ever. My body was falling apart right before my eyes and from where I was sitting nothing was being done to change that.
Praise God for my husband. T took one look at me after I came home (my mom picked me up form the hospital), realized I couldn’t function (no walking, standing, getting myself to the bathroom, or rolling over in bed..and definitely no stairs), and brought me to another hospital that night. We spent the entire car ride trying to figure out how I had been discharged in such a terrible state. I still don’t know the answer to that.
Next stop was the Wonderful Hospital. I was admitted right away, and they immediately began running more tests. They started with more blood work, of course, but when that all came back normal they tried something else! This was pretty exciting; could I actually gets diagnosis here? Hope came creeping in again.
Over the next week and a half, I underwent a second EMG/NCV, this time with a Neuromuscular Specialist (yay!), two MRIs, and one (extremely painful) spinal tap that was later titled traumatic after the doctor hit a blood vessel, making those results inconclusive. The MRIs were not painful, but emotionally terrifying (small spaces and I are NOT friends). The EMG was about as painful as the first time, but this time something on the test came back abnormal. I wanted to cry tears of joy when that happened. This was a clue; proof that thee was actually something wrong. One step closer to an answer!
The spinal tap was single handedly the most painful thing I have ever undergone in my life. The test itself sent shooting pain down my leg, and the after effects “headache” was like nothing I’ve ever felt. It was absolutely terrifying, and allowed me to have one of the most intense prayer experiences I have ever known. God was in my room that night, wiping my tears and holding me as I lay there in the dark screaming. God was there.
More waiting.
After carefully reviewing every test result, and looking at my symptoms (which continued to worsen), I was given a diagnosis of CIDP. The prognosis varies wildly from one person to the next, but this is something that I will be dealing with for the rest of my life.
In all of this, I spent nearly a week unable to see or hold my baby boy. My heart broke on those days, and the nights were filled with many tears.
Dr. S was right (GBS is very closely related to CIDP and the treatments are the same). I was right. Disbelief washed over me, but so did hope.
More waiting.
After speaking with the team of doctors, they determined it was best to try a five day course of IVIG treatments. A final blood test would need to be done to ensure I wouldn’t be allergic to the treatment, then we could begin.
Waiting.
Tomorrow is supposed to be the magical day. The first day of treatment. We still do not have the test results, but they are expected tomorrow. So, we wait and see. And I try to stay positive.
My body continues to get weaker. I am able to do less and less physically. But I know God s with me, and I am clinging to Him.
So, how am I feeling? I am relieved to have a diagnosis. Physically, I am weak and broken. I am terrified of this new, uncertain life. I am hopeful that I will walk again. I am a little angry and hurt. I am determined.
There are moments of victory, and moments of sorrow, but through it all God will be praised.
This is my new normal. Welcome.
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