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...
I was in the hospital last week for 5 plex treatments... It definitely helps with my voice and swallowing. I have a tunnel catherater in my chest and now the neurologist has said to leave it for maintanence treatments. I am having a VERY hard time dealing with it. No showers, pain, weekly dressing changes but mostly anxiety over having it. Anyone else in the same situation? I need some advise on how to deal with it. Thanks!
When it gets healed, the pain should go away. I think a lot has to do with how they are positioned, because some of mine hurt like crazy, but others not so much.
If you are going to be getting plasmapheresis long term, you may want to consider an implanted port.
I didn't find out about these until most of the veins in my chest were occluded from catheters being inserted then removed.
Some doctors believe in leaving them in place others want them out as soon as your treatment is done, but this can be damaging to the veins.
The ideal situation is to get a large bore implanted port on each side because they have greater blood flow. But I did get a dual port vortex placed because I only had the one available vein left to use that had my external catheter in it. If you do decide to get an implanted port, make sure it is one with enough blood flow capability for plasmapheresis. I had a surgeon that wanted to place one during my peg tube surgery, but after researching I found that it wasn't suitable for plasmapheresis.
I understand what you're going through right now, but I promise, it will get easier, especially when tge pain goes away.
Hugs to you.