Day 17- The Faces of Guillain Barre: Sheryl's Story

Tuesday, May 17, 2016 0 Comments

Sheryl and her husband before being struck with Guillain Barré 

My journey started with pneumonia and strep throat in late February/early March. Just as I was recovering from that, my legs, feet, arms, & hands started tingling and became numb. It didn't hurt but sure was odd. My other symptom was burning/stabbing pain in my back between my shoulder blades that struck almost always at night, just as I was going to bed. The pain was so unbearable that nothing I had at home would touch it. It was awful but that pain is what I credit with making me go to the ER until I got diagnosed correctly.  Even after getting Lortab and Percocet at the ER, I was still in pain.

I went to the ER four times in nine days.

The first time I went to the ER, I was diagnosed with a pulled muscle. I had coughed violently with the pneumonia and strep throat, so it made sense. Within a day and a half, I was back in the ER because of the same intense back pain. 

The second time the diagnosis in the ER was pleurisy. That sounded logical too. After all, the doctor said he had seen a spot on my lung.  Curiously, only days earlier, in fact, one day before my first ER visit, my GP had ordered a chest x-ray to follow up on the pneumonia and that x-ray came up clear.

I was back in the ER within a day and a half. This time I went by ambulance.  I was at home alone.  I also thought they might take me more seriously if I arrived in an ambulance. The third time, the diagnosis was gall stones. I was sent immediately to the doctor who would take out my gall bladder the next day. I really thought this was it. So, I'm at home recuperating from surgery and thinking I'm on the road to recovery and I get two good nights with no back pain. Then it struck again. 

I thought my poor husband was going to lose it. I think he came close to a panic attack. He was worried about me but also angry that they hadn't gotten to the bottom of the problem. 

During all three of these ER visits and my trip to the gall bladder surgeon, they all dismissed the tingling as low oxygen content or hyperventilating. Never mind the thing they put on my finger said my oxygen level was 97%.  All along, I'm also getting weaker and weaker, barely able to walk.

So off we go to the ER for the fourth time. This time, I got yet another ER doc and she called in a neurologist. The neurologist and her student doctor questioned me and immediately thought I had GBSand admitted me to run tests. They did an MRI which showed nothing but also did a spinal tap. The spinal fluid had a protein level of 180 and I was told it was supposed to be about 40. 

So, for 5 days in a row in the hospital, I was given a bottle of the IVIG. I was also given (in pill form) Gabapentin, 600 mg 3x per day. I needed pain meds to some degree every day. 

After they found a room for me, I was transferred to a rehab hospital. My husband was able to transport me and the place is just behind the hospital about a block. I was there a week doing physical therapy. Toward the end of my stay, the rehab dock halved my Gabapentin. I could tell...I needed more pain meds. The tingling had come to be limited to my toes and the tips of my fingers but the back pain was (and is) always lurking. I was released from rehab on my 54thbirthday.  What a beautiful day that was!

I had an appointment with a new neurologist a week or so later.  The neurologist who diagnosed me was a hospitalist and didn't have a private practice.  Also the neurologist who diagnosed me referred me to him because he has had more experience with GBS. He increased my Gabapentin to what it was when I left the hospital and said he had more room to increase it if necessary. He changed my Prozac to Cymbalta because Cymbalta has some kind of pain-killing element to it. He told me how much of the Percocet I could take safely. 

During Physicaly Therapy 

I have a follow-up appointment in late May. I have been prescribed out-patient PT and have had about 6 sessions.  That is going well

I have been back to the ER once since diagnosed due to back pain. That was before I knew how much Percocet I could safely take. If I had known, I possibly could have avoided that trip. That was Sunday night. I slept all day Monday due to Morphine and Dilaudid. I worked a half a day Tuesday and all day Wednesday through Friday. I was very tired and had to take some pain meds but I did better than I thought I would. I am starting my fourth full week.  My job is a desk job and my husband works at the same place I do, so that's made it feasible.

My main concerns now are that I am a little wobblyand weak especially in the legs.  The back pain was tough to manage at first but it hasn't reared its ugly head in about three weeks nowThat's great because I don't want to get addicted to pain meds. Apparently, not everyone who has GBS has the back pain. It is listed on the Mayo Clinic's website as a symptom. I'm not talking about back bone pain or muscle pain. This is nerve pain. On that last trip to the ER, after I had already been diagnosed, I told the ER doctor that I had been diagnosed with GBS by the staff neurologist and that the pain was due to the GBS.  He asked, "Is there back pain with Guillain Barre'?" I told him yes but I don't think he believed me.  

From everything I've read and been told, I am very, very lucky to have this "mild" case. I only missed a month of work and I'm blessed to have the sick leave to cover it. I'm 54 and this was my first major illness and my very first hospitalization, so I really shouldn't complain. 

Now that I've been diagnosed and on the road to recovery, it's easy to look back at those first three ER visits and laugh.  "What doesn't kill me makes me stronger" comes to mind.  It's really not funny, however.  My tingling progressed slowly. What if it had progressed faster like so many of the stories I've heard from other survivors?  I'm told this syndrome is rare, yet everyone I've spoken to about it knows someone who's had it.  So, why don't ER doctors know anything about it? Is it not covered in medical school?  It should be.  

Sheryl Holtam