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 friends!
Due to my terrible veins, some of you may remember that in mid-February I had a port placed and at the same time my 2nd IGg infusion it was wonderful! Not having to worry about getting and maintaining an IV was pure bliss......until 2 wks after the port was placed.
I woke one morning with a terrie left sided head neck and arm pain and my left arm started swelling. I immediately called the surgeon who put in the port, they had me come in. A long ultrasound later and it was discovered that I had developed a blood clot in my internal jugular vein in the left side of my neck.
I was hospitalized for 3 days at which time I was started in blood thinner shots, which I now give myself 2 x's a day.
One thing that frustrates me most is there is disagreement in whether my port can be used for future treatments. They have been able to push fluids through it but cannot get a blood return.
The surgeon says, sure! Go ahead and use it. But the radiologist who did my latest ultrasound and my internal med dr says no way - they don't want to take a chance in dislodging the clot.
I'm so lost!! The IGg worked so well for me. My other option is immunosuppressant drugs which are not a first choice for me, due to side effects.....which if you haven't figured out already, if something is going to happen to someone, it's going to happen to me!! Ugh!!
What are some of the immunosuppressant's being used and thoughts on them? Any thoughts would greatly be appreciated!!
Due to my terrible veins, some of you may remember that in mid-February I had a port placed and at the same time my 2nd IGg infusion it was wonderful! Not having to worry about getting and maintaining an IV was pure bliss......until 2 wks after the port was placed.
I woke one morning with a terrie left sided head neck and arm pain and my left arm started swelling. I immediately called the surgeon who put in the port, they had me come in. A long ultrasound later and it was discovered that I had developed a blood clot in my internal jugular vein in the left side of my neck.
I was hospitalized for 3 days at which time I was started in blood thinner shots, which I now give myself 2 x's a day.
One thing that frustrates me most is there is disagreement in whether my port can be used for future treatments. They have been able to push fluids through it but cannot get a blood return.
The surgeon says, sure! Go ahead and use it. But the radiologist who did my latest ultrasound and my internal med dr says no way - they don't want to take a chance in dislodging the clot.
I'm so lost!! The IGg worked so well for me. My other option is immunosuppressant drugs which are not a first choice for me, due to side effects.....which if you haven't figured out already, if something is going to happen to someone, it's going to happen to me!! Ugh!!
What are some of the immunosuppressant's being used and thoughts on them? Any thoughts would greatly be appreciated!!
I've had to have it several times and it works really well.
Of course, if your clot is not actually 'in' your catheter, that wouldn't work.
I have also had conflicting advice on the care and maintenance of mine, so it's hard to figure out what to do. I hope and pray you get it fixed soon.
I spoke with a pharmacist the other day who was checking my Coumadin levels, just another issue I have to deal with now, and he said that the immunosuppresents for the most part are not as bad as what they are said to be and they may work better for me than the Igg did - I too had aseptic meningitis with my first of two treatments and did have terrible headaches but was so thankful for the improvement that I saw on Igg that I was willing to deal! :)
limpnoodle, the clot is outside of the port catheter - I see my internal med dr this coming Tuesday and I do believe that I am going to ask to have the port removed but of course I am assuming that i will have to wait until the clot is resolved ~ Just not sure though. I certainly don't want to do anything to exacerbate it!
I see my new neuro, (as I am in the process of moving) on May 8th. I saw my current neuro yesterday and we discussed my treatment options for the MG and I do have some but she of course wanted to not start anything as she won't be seeing me again.
Having veins that have turned on me is very frustrating - as they are barely able to get a simple blood draw any longer - I was last sent to an ER for lab work as it was felt they were better equipped to try and access any veins. I suspect they will be going for my feet veins very soon :/.
I appreciate your continues good thoughts and support!