MY daughter called my new neuro and told him I am much worse inclding and esp my breathing. I wanted to go and have aid take me Thurday then I could rest as I feel closer to a crisis than I have in over a year or more. Jen said what if they want to see you today. I said tell them if I do that kind of activity today I will end up in hosp. They couldnt do Thursday they gave me tomorrow at 5pm. He is out of town next week so I am so glad I didnt let this go and try to get by. My daughter and ggranddson have their birthday on 16th so I gotta get better and cant do any appointments next week or wont be fit to get to the party. I swore not to miss anymore of kids parties after I missed my granddaughters last year.

I so wish I hadnt had to talk on the phone today. I needed to but now I regret it so much. I found out in call to hosp radiology that CT scans have more contrast dye by far than an MRI. And the swallow test has none. I told him I got really red after test as noted by my daughter. She said wow mom you have red cheeks. I normally am very pail unless I get fluids then color improves somewhat.

Oh I hope the new records that came to my doc help and where I am at this point.

Annie59

Sorry I ended up with 2 messages. MY computer was acting up and so I clicked again as it was frozen. Then I left the site. Annie59

Annie,

CT scans use a dye that contains an iodine compound. Some folks are allergic (esp. any one allergic to seafood) - - and many (most) MG'ers don't do well with it.

My neuro ordered a 'lite' contrast when they did my CT scan for thymus. Apparently, they can make a less concentrated mixture of the iodine if the orders call for it.

With MRI's - they use a completely different dye compound (no iodine) - and therefore no problem for most folks ... even MG'ers.


Since the CT was many days ago, any (negative) impact from the dye have likely passed by now.

Thank you for this information. I had no idea about this part of the dye story. I want to get the MRI the ENT ordered on my throat and so the swallow test.

I have been in a down trend since I went on the extra medication a while back. First it was the steroids, then morphine and then the vit D 50K. I got about 3 good weeks after the fluids and vit D started. Then a bigger decline with worse gastro symptoms came on and have gotten worse. I just realized this morn at this time of the year I am usually pretty darn good cause of the cold of winter. To be this bad is even a bigger deal in winter. I have been struggling so I hadnt even thought of that. Everyday is an exercise in putting out fires. I have gotten lost in that.

Annie59

I saw my neuro. He sure never hurries a person which for me is a big advantage. He wrote a referral to the gastrointestinal doc and my daughter pushed real hard for hm to understand it needed to be next week. I didnt realize she had become so scared about how much worse I am. About this new stuff with my insides, my digestion.

We also got into discussion on my breathing doc. I didnt realize he My great breathing guy was not on his radar. He asked if I had had a pulmonary test. I thought he meant the big pulm stress test (exercise). I told him that that is what confirmed that it WAS my muscles and he wrote a very assertive report and told me I had to see a muscle neuro asap and a very good one which didnt exist at the univeristy at that time. This was interesting to me in that this excluded the pediatric doc I saw last and the MDA doc who was filling in for the missing slot they couldnt find a muslc especialist for. The MDA doc was their MS doc there a very long time.

So this led to a discussion aobut doing a tensilon test now as I had said my pulmo had requested it. My neuro said the best place to do it WAS the university neuro-0ptho department as they have a camera to film it. Like I would ever trust those doc it that department to do that kind of test on me as the they blew the neostimgine one. WE discussed why is hadnt been done/ordered by my pulmo. I said he documented that it needed to be done along with a swallow test in november. He expects people to do their jobs and perhaps not step on toes. I am gonna call him and ask him if he will do this with Dr R my neuro now. And aparently I need to get this neuro his records as he is the most supportive doc and my tests with him are the best black and white proof. He said what if it comes back negative. I said I know what mestinon does for me. It was a miracle to me when I had no expecaation of success or what it woujld do at all. And it made my breathing the most normal in many years. I know it will be positive. Thos he is helpfull doubt like this is hurtful to me. I admit I am more sensitive to this as my reserves are gone with all that is going on. And I dont like it when someone uses the logic why do it(bother with the test) when you are already on mestinon as if this barely living quality of life is in anayway shape or form acceptable. I pray for the day I get IVIG or plasmph. Tears are coming. Gotta go.

Annie59

My doctor was well aware of my past allergic reaction to contrast dye. So he gave me a 1 prednisone at 9pm then 3am then 9 am again and benadryl at the same times. But non the less I have been sick since the scan. Even ended up in ER next day because my temp went to 95.2 and my cheeks were ruby red. Felt they they were on fire and surprise surprise. The ER said I had a delayed reaction to the contrast dye. Friday the 8th of April I had the dye and today the 11th my cheeks still red and feel like they are on fire doctor told me. Not his fault probably something else that caused it. Which I highly doubt! but either way felt a little better reading what you wrote.ty