At Reeve's I was surrounded by people who cheered me me on and by all of my loved ones.  Being a Hicks I am naturally tenacious and that's how I was during my pt.  By the end of may 2011 I was ready to go home and do out patient therapy.  The one thing that was still a factor was and to this day still is the pain that started at the onset of gb.  But I made a lot progress and graduated from pt in late august but by the end of October  I  plateaued.  Then as 2012 started I started to get worse.  I remember a neuro appt and as we were talking out of no where I remembered a dr back from when I was in the hospital say something about myasthenia gravis. Once I convinced my dr that I should be tested and get the ct the blood work came back positive and my thymus did show up enlarged.  By the end of June I had a confirmed diagnosis and my dr's and I were working on a plan of attack. As if going thru gb then recovering and then discovering the mg didn't happen fast enough things began to go faster.  At the end of July I had an mg exacerbation which landed me back in the hospital for a round of ivig.  I spent four days in the hospital and the day that i was released I went to my pre surgery apt for the thymectomy.  Two weeks later I am in surgery having my thymus removed.   Healing from the surgery seemed simple compared to daily life which had become so hit or miss. I definitely have more bad days than good.  About a month or two later we re did the blood work and did an emg/nerve conduction study.  Unfortunately, the tests all came back still positive.  So my dr's have tried me on all of the standard meds for mg.  My current combination is 60mg of prednisone every other day and cellcept 3000 mg daily. Those two in combination with other meds that help with my nerve damage from the gb and my chronic upper spinal pain seem to be the best that can be done.

I am having one of those days where I want to be out taking care of things or having coffee with friends but I made it to one apt and I was out for only 2 hrs and now I can barely walk and feel like I worked out with a trainer.  I know everyone has something that tests who they are and their faith.  But what I realized is that I am not alone and maybe someone going thru mg or gb or anything that has forever changed their life can maybe relate.  Well, my hands have spazed into claws so this good bye for now.  I pray ya'll have a great day!!

Where I left off....Oh yeah spinal tap.

So they did the spinal tap and took me back to my room. As it so happened to be the first time that I wasn't surrounded be a or many loved ones. It had been all of 10 minutes and a random Dr. stuck his head into my room and said that he heard that there might be a gb case. As he's talking he was also closely looking at me and  noticed my breathing was becoming hindered. Then poof he was gone.  Just a bit after that my Dr. came in and said that I was headed for ICU so I had to shuffle everyone back because of all of the paperwork and the poa.  As I lay paralyzed realizing exactly why my mom had this specific fear in her eyes and same foe Chris I turned all of me over to him and I suddenly was at peace a knew that I could get them to go home and that I would be ready maybe not so awake when they came back the next day. So I made it through a week of ICU with IVIG treatments and then they felt that I was stable enough to go back to my own room.  Now the rest of the stay at this particular hospital(Metropolitan Methodist San Antonio, Tx) was horrific. I was treated as if the confirming spinal tap and the fact that I couldn't walk and the chronic pain on my spin wasn't real. One nurse said oh it cant be that bad just sit in a chair. Also they let me sit fecally impacted for 21 days that was immediately handled the first night I was in the care of Reeve's Rehabilitation. I am grateful that UHS and Reeve's were an option in a time when not much made any since. Learning how to walk again and do just basic things such as swallowing gave me an entirely  new perspective for those who have lost arms, legs and have moved forward with their lives. So we will end here, I was transferred from Metro Methodist to Reeve's and that's when I really saw some miracles take place.

This is just some basic info on GB and MG

Guillain-Barré syndrome

Consult a doctor if you have a medical concern.

Guillain-Barre syndrome is a serious disorder that occurs when the body's defense (immune) system mistakenly attacks part of the nervous system. This leads to nerve inflammation that causes muscle weakness and other symptoms.

Causes - Symptoms - Tests - Treatment - Prognosis

Myasthenia gravis

Consult a doctor if you have a medical concern.

Myasthenia gravis is a neuromuscular disorder. Neuromuscular disorders involve the muscles and the nerves that control them.

Causes - Symptoms - Tests - Treatment - Prognosis

Combined Guillain-Barré syndrome and myasthenia gravis.

Hsieh MY, Chan OW, Lin JJ, Lin KL, Hsia SH, Wang HS, Chiu CH.

Source

Division of Pediatric Neurology, College of Medicine, Chang Gung University, Taoyuan, Taiwan; Graduate Institute of Clinical Medical Sciences, College of Medicine, Chang Gung University, Taoyuan, Taiwan.

Abstract

Background: Guillain-Barré syndrome and myasthenia gravis both lead to muscle weakness but the two combined is uncommon. Detection of these entities can help identify forms of autoimmune neuromuscular diseases that may respond to immunotherapy. This report sought to characterize the clinical features of these two entities when combined. Methods: This report is of a case of combined Guillain-Barré syndrome and myasthenia gravis. The clinical features were analyzed and correlated to those published in English literature from 1960 to 2012. Ten reports and 12 cases, including the present case, were reviewed. Results: There were 12 patients (4 women and 8 men), aged 17 to 84years, with combined Guillain-Barré syndrome and myasthenia gravis. Four had post-infectious Guillain-Barré syndrome followed by the development of myasthenia gravis concurrently or concomitantly within one month. All cases had symptoms of ptosis and areflexia. The other common presentations were limb weakness, oculobulbar weakness, and respiratory involvement. Functional outcome was mentioned in 10 patients and seven had good outcome (Hughes scale ⩽2). Conclusion: Detection of ptosis with or without ophthalmoplegia, distribution of limb weakness, and reflex can help in recognizing combined Guillain-Barré syndrome and myasthenia gravis. The early recognition of this combination of peripheral nervous and neuro-muscular junction inflammation is important for initial treatment and prognosis.

Copyright © 2012 The Japanese Society of Child Neurology. Published by Elsevier B.V. All rights reserved.

PMID:

 

23177060

 

[PubMed - as supplied by publisher]

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Hi to all of ya'll that might read this blog. My name is Andrea and I am 32 years old. Any information I may post is from my experiences only. In 2011 I went thru guillian-barre and then got the diagnosis of myasthenia gravis. Since my emg and nerve study made a solid confirmation I have had 3 exacerbation's requiring IVIG treatment. But I also hope that a specialist reads all of what I am going to write and maybe could shed more light on where I am at medically.

Back in April of 2011 I had started to walk everyday and had gotten up to 4 plus miles a day. Then one morning I had gotten up and had a really bad stabbing sharp pain in the middle of my back on my spine along with needle prick pains in my toes. Being clueless to what these symptoms might be a warning for I went on about my day.  While walking my dogs I noticed that the needle prick pain had spread to include both feet and from my elbows to my fingertips. Also my walk was turning into a shuffle. For  about 4 days I endured the pain on my spine and the needle prick pains . I finally went to the emergency room and they diagnosed me with an upper respiratory infection and moderate spinal pain and sent me home along with instructions to go see a pcp in three days. Those three days just got more and more frightening. I lost the ability to shuffle up an incline.  I had to be picked up to be put into our vehicle. The day that I saw the Dr. the nurse called my name and my legs completely disappeared as I fell which happened so fast yet so slow I realized that something very serious was going on but what?

Freaking out in the ambulance the only comfort I could find was in Christopher's voice.  In the er waiting for the dr I was literally frozen with intense pain in my spine and scared. I was in the hospital for a weekend before a Dr. came by. Then when the first neuro specialist came in he did a quick standard test on me...which I nearly poked my eye out. His conclusion was that I didn't have a neuro problem and he left. By the end of the next day they finally decided to do a spinal tap also my friends had mentioned guillian-barre and the spinal tap supported this finding.

Thats all for right now...I'll be back soon!