Kylee91003

Hi, do you think that the cipro caused your mito or did it make it worse? I am trying to figure out if I "just" (as horrible as it is) am having a cipro reaction or if it kick started an underlying neruological condition.

Paul

How have you been feeling?? Thinking about you!!

wow, what do they say as far as progression and the vitamins helping etc?? Did you have droopy eyelids.. Do you have any intestinal issues? My brother recently developed similar GI issues as myself, we have some similar facial features as well.. so I do always keep an eye out for genetic causes of all of this.. How are you feeling?? Thinking of you, and glad you are finding some answers. Prayers sent your way!

Kylee, I was just thinking about you, wondering how you were, and worried that I hadn't heard from you. I'm so glad they have a better understanding of what is going on with you. There is someone else on this forum who was recently diagnosed with mito . When I figure out who it is, I'll send you a message. Even though I think this disease varies greatly from person to person as how it affects them, it would still be nice for your to have someone else to talk to.

I'll be back in touch soon. so happy you're finally on the road to treatment! (wish it was an easier disease though, of course) ♥

Really?? Are they going to do a muscle biopsy?? I have wondered if I had mito dz as well (though I know IVIG wouldn't help)- the droopy eyelids, and I have intestinal and heart involvement as well.. I am wanting to ask about a muscle biopsy.. Otherwise I am ok, just getting over the flu - ugh! Doing better than I thought I would be doing.. Can mito disease cause tongue atrophy/triple furrowed tongue? What kind of vitamins do they have you on? Are you feeling better from it?? Think about you often!

so did they diagnose your weakness as vasculitis then?? or was that a side effect from the IVIG?? Do you still have a rash? Hows your weakness? what are they saying is the plan right now??

How are you?? Thinking about you.. please let me know how you are doing?

how are you doing?? how are you feeling?

Are you at a university center now? If so, then maybe it's time to consider MAYO or something like that? I felt the same way a year ago.. I thought I was going to die while everyone was just slowly trying to figure it out.. i couldnt' breathe, talk, hardly walk, hold silverware, all while my heart rate and GI systems were going crazy too! Do you like the Dr's your seeing? Do you feel they really "get" you? If you can find someone you feel like you are really in good hands with that helps tremendously.. Have they done a muscle biopsy? If not, maybe they should? Steriods can actually make many neuromuscular disorders worse, as far as the weakness goes.. especially in high doses.. How are you feeling with your neuro symptoms?

Can you try sending me a private message? maybe that would be a bit easier? As far as the itching and skin stuff goes.. I don't think that's a completely abnormal reaction to the IVIG.. if the rate is slowed down a lot.. that usually helps me.. (i go no higher than 100.. but even at 100 get itchier than when we went to 90).. as far as the ANA going to 1:80.. that isn't even considered positive by many standards.. it is very normal for ANA"s to fluctuate quite a bit.. so it might not be a reaction from the IVIG, but rather a clue to what is going on with you in the first place?

I would really like to talk on the phone with you if that would be ok? It is fine if you feel uncomfortable this way is fine I am just having a really bad time. They don't know what is worng my Ana went up after the ivig so they think it has caused some kind of autoimmiune response. Don know what they said if it gets to 1:360 they will use plasma exchange. My skin is very effected no rash but burning itching and strange texture. No one can figure it out. I am so scared because the steroids didn't touch it. I feel at a loss.

Why were you admitted to the hospital? Did they give you more IVIG? what were they giving the steriods for? how high did your ANA get? Mine got as high as 1:860 .. but goes down as low as 1:80 (rarely that low though).. Have your symptoms progressed or just not improved? What are they saying as far as possible diagnosis? Sorry to hear you were in the hospital.. that is NO fun! Your ANA going up is a good thing, as it points to something treatable! What reaction are you having to the IVIG? I Have had many reactions.. so I am familiar with many of them!

sorry to hear that! why was it a waste of time? I am doing well.. somedays better than others.. I stood up on my toes to reach something for a few minutes and then i can't walk right due to calf weakness for hours - SO STRANGE!! Great thanksgiving here with my kids, how about yourself? Your IVIG is coming up soon - could you tell that your last "wore off" or anything??

thats great!!! They switched my brand and now I am able to go at a faster rate and itch less/rash, chest pain etc less than before.. apparently before I was on the "dirty" brand they said.. I guess the more expensive brands are supposed to be "cleaner" aka less byproducts or something . Good luck!!! Hope you have a great thanksgiving!

thats great news!!! When do you start up again?? how often are they going to do it? Have they talked about any other treatment? They talked about immunosuppresants with me.. but we decided against it since the kids have so many germs So we just tried the plaquenil and IVIG.. I wonder at times if there is a better "cocktail" and then wonder if I even want to try or mess with it, as it could cause other problems.. The plan now is continue on with the IVIG... not sure if they will do a trial of mestinon or something like that or not!? just go day by day I suppose.. How are you feeling these days