I was recently in the hospital for 5 rounds of plasma pheresis. During the 4th treatment I experience EXTREME pain in my neck where they had the catheter for the procedure. They stopped the treatment, did an ultrasound and discovered a blood clot. They stopped all treatment and started me on blood thinners. I was discharged to home.

Every since then I have had extreme difficulty breathing. I get out of breath if I make my bed or walk from one room in my house to the other. Sometimes, I am literally gasping for air.

I saw my regular doctor last week and he sent me for an urgent CT scan to rule out additional blood clots or pulmonary embolism. The test came back fine and showed no further blood clots. BUT I STILL CAN'T BREATH!

I don't know what is wrong. I realize it could be the progression of my MG affecting my diaphramatic muscles or something else. Other than asking for oxygen at home what else should I do? This is limiting my life more than any other MG symptom and it is scary.

I hate you are having such trouble but if this was me I would go to the emergency room asap. Does your chest hurt with each breath? or does it feel like weakness breathing problem? Either way to to the ER.

Have them send you for pulmonary function tests right away and a consult with a pulmonologist. They are essential for an MGer to have. They can do the breathing tests, including MIP and MEP, and run an arterial blood gas. A good pulmonologist will also walk you around with an oximeter on to see what happens when you move, not only when you sit still! That's what mine does. You HAVE TO be evaluated by someone who understands breathing!!! Neuros "get it" but they don't evaluate it.

Are you weak all over? Can you squeeze your fingers or hold your arms up or lift your legs up while standing? When I am worse, I do those kind of "system checks" to make sure I'm not more weak than I think I am.

Can you afford to get a cheaper oximeter at Amazon? The best one, the Nonin brand, is a bit more expensive. It can help you know how your stats are doing in relation to your breathing. If your are having breathing problems, your pulse will also get higher because your heart is trying to pump faster to get you more oxygen.

Did you have the iodine contrast with the chest CT? If so, iodine can make MG worse. Drink lots of fluids to help get rid of that stuff. Are you allergic to shellfish? That could make you have breathing problems after having iodine too.

Blood thinners are not benign. You can become anemic, be open to a bleed, etc. Have they checked your ProTime and INR? Hemoglobin? Did anyone talk to you about what it means to be on blood thinners?!!! Ask your primary doc about what you need to know, what supplements you may need or what to avoid that may make the blood even thinner, etc.

And when in doubt, go to the ER. Not being able to breathe well is an emergency. Period.

I hope you and your docs can figure all this out and soon!!!

Annie

I will keep you in my thoughts and prayers. I hope they find out what the problem is real soon.