Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi All
Just wanted to quickly apologise for being out of touch and away from the site for so long.
I have had a tough last 6 months and spent 5 of the 6 in hospital. In May I was admitted in crises. In the middle of my PLEX's My vascular graft they use for access developed 3 aneurysms and the biggest of these blew resulting in a massive bleed around my femoral nerve. I required surgery to evacuate the clot and relieve pressure from the nerve. The surgery was successful but as a result of my immune suppression I developed sepsis in the wound and graft. I had a veritable zoo of organisms take up home in my system, including MRSA, Klebsiella, Enterobacter and Acinita Bacter. I required 4 surgeries and months of IV antibiotics and as I suppose can be expected, the sepsis caused several more crises which needed to be dealt with. The graft obviously couldn"t be used for PLEX and because my vessels are so damaged from years of being ill, alternate access was a problem. I was treated with 3 full 5 day courses of IVIG for each of the 3 episodes of crisis but because my body is so sensitized to the IVIG, I ended up with chemical meningitis which was horrendous!
I had just got out of hospital after all this when I fell ill again with infection and was readmitted with another MG crisis. The antibiotic they administered affected my disease so badly that I was rendered almost completely paralysed. It was all terrifying but I am happy to say I am here to tell the story. The antibiotic was one I had had before and not reacted too. It is also not one commonly related to MG worsening but as you all know every drug has the potential to aggravate MG and this one sure did.
I am out of hospital now but still battling with weakness. I go for an angiogram on thursday to assess the graft and see if I need further major surgery.
Just to say that even when I am not on the site my MG family are in my thoughts and prayers. Hoping all of you are hanging in there and enjoying a happy lead up to the festive season.
Thoughts and love
Ange
Just wanted to quickly apologise for being out of touch and away from the site for so long.
I have had a tough last 6 months and spent 5 of the 6 in hospital. In May I was admitted in crises. In the middle of my PLEX's My vascular graft they use for access developed 3 aneurysms and the biggest of these blew resulting in a massive bleed around my femoral nerve. I required surgery to evacuate the clot and relieve pressure from the nerve. The surgery was successful but as a result of my immune suppression I developed sepsis in the wound and graft. I had a veritable zoo of organisms take up home in my system, including MRSA, Klebsiella, Enterobacter and Acinita Bacter. I required 4 surgeries and months of IV antibiotics and as I suppose can be expected, the sepsis caused several more crises which needed to be dealt with. The graft obviously couldn"t be used for PLEX and because my vessels are so damaged from years of being ill, alternate access was a problem. I was treated with 3 full 5 day courses of IVIG for each of the 3 episodes of crisis but because my body is so sensitized to the IVIG, I ended up with chemical meningitis which was horrendous!
I had just got out of hospital after all this when I fell ill again with infection and was readmitted with another MG crisis. The antibiotic they administered affected my disease so badly that I was rendered almost completely paralysed. It was all terrifying but I am happy to say I am here to tell the story. The antibiotic was one I had had before and not reacted too. It is also not one commonly related to MG worsening but as you all know every drug has the potential to aggravate MG and this one sure did.
I am out of hospital now but still battling with weakness. I go for an angiogram on thursday to assess the graft and see if I need further major surgery.
Just to say that even when I am not on the site my MG family are in my thoughts and prayers. Hoping all of you are hanging in there and enjoying a happy lead up to the festive season.
Thoughts and love
Ange
Wow - you have really been through a lot. No need to apologize! Thanks for giving us your story. I read many stories to my husband so he is aware of what possible complications could be with my disease and how he might have to be my advocate for work, insurance, etc if I have a crisis.
I have learned so much from everyone and we are all snowflakes but a good education in possible outcomes is good to have in our back pockets.
Heal well and rest a lot. I'm giving out a lot of cash and gift cards this year!
Flutebell
Happy Holidays!
I am so sorry - to hear about all that has afflicted you.
What an awful long siege, you have been through!
Hang in there! Keep the faith!
- Ross
I am so sorry for everything you have been thru. I wish you the strength to continue your fight. May 2015 bring you healthy, happy days!
Judith
Antibiotics are not usually our friends...
Get better soon!