Hi Jana,
Gastroparesis - I have it intermittently. At the moment I am only able to eat one meal a day because my tum still feels full from the day before. I throw up food that is 9 - 24 hours old. Thankfully I havent got to the vomiting stage again yet but that will come. Then I eat just 6 ritz crackers a day and feel dreadful. Although the weightloss is great as Im on the heavy side. Gastroparesis can be part of something called dysautonomia (basically a problem with your autonomic nervous system). The autonomic nervous system control all the things your body does without thinking so heart rate, body temperature, breathing rate, blood pressure, digestion. I bring this up (really no pun intended lol!) as autoimmune diseases ( like MG) are one of the causes of dysautonomia along with ehlers danlos syndrome. Ive spoken before on this subject and I know a few of you have noticed that your blood pressure readings are becoming low etc. Or you have noticed that on standing your heart rate goes nuts. I really believe that dysautonomia needs more recognition in the autoimmune disease community. I do believe many of you are suffering with additional issues along with the MG. Low blood pressure can cause fatigue, excessive thirst, brain fog, nausea and a whole host of other symptoms. That you could be suffering with on top of MG. Simple things like increased fluid intake and additional salt ( I know everyone thinks salt is bad. Believe me without my salt tablets I would rarely be conscious!) If your interested there is a great website just google Dinet or POTS place for more info. I hope this helps Rach |
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SOOOOO many people are getting pancreatic cancer, now. When Dad was diagnosed, it was so very rare. :( I just made an appointment with my GP. ...he can get me a QUICK appointment with a gastro. :hug: |
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I got aseptic meningitis from my one and only round of IVIG. I was sick for more than a month afterwards. Doc agrees that we do NOT want to repeat that. |
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Yikes!!! Yea been there done that with the aspetic mengigitis.. It is purely a rate thing with me.. though I have gotten it bad once, and then milder a few more times.. it always sets me back, never mind the misery of the pain, fever aches etc!!! It can leave me weaker for sure.. I also get some bad skin rashes from it - again worse with increased rate... They mentioned plasma exchange for me, but man it all makes me nervous!!!
I hear ya about the not wanting to be intubated.. I was freaked out when they almost intubated me.. I barely remember my son being born since they had me on bipap about to intubate.. i was in fear for my life at such a magical moment.. it was completely unexpected... as I thought any weakness or droopy face was just a pregnancy thing prior.. They did have me on my side for the endoscopy/colonoscopy though, which i'm sure is standard... Good luck, Zofran helped me some, though by no means resolved the issue! |
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Aseptic meningitis -- worst headache(s) I've ever had! And I have bad migraines. From what I've heard, MOST people don't have a problem with plasmapheresis (PEX). I was the oddball -- BP bottoming out. The central line was NOT fun -- tubes in your neck and stitches holding the contraption in place. I was soooooo glad to get that thing removed! But, if given a choice, in an emergency I'd rather do PEX than IVIG. The aching, rashes, and general discomfort after IVIG -- like having the flu for a month! |
Yes, PEX makes me nervous for all of those reasons!! Did you get a rash too?? I'm sure i look like I have scabies at times.. I will literally claw my skin off .. I look like I have eczema.. though it is getting less and less with most infusions..
Agreed with the headache thing!! I had migraines for years (haven't had any since being off birth control pills).. I had a gradually worsening HA in the hospital.. and fell asleep after all the benadryl... when I woke up with that AWFUL headache.. I rang the nurse button to have them bring me some Motrin.. but by the time she got in my room (5 minutes).. I said ok, i can't handle waiting for almost an hour for it to kick in, i need something IV... Toradol was amazing!!!! They tried other things too, but the toradol was the best! no fun at all! So do you just do mestinon for now? I haven't tried any oral meds.. but I would like to just try them.. it would be great to decrease my infusions, as my poor veins are tired.. |
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Funny thing -- after menopause my migraines stopped. IVIG seems to have brought them back -- and even worse than before. I think the aseptic meningitis may have "fried" something in my brain. :( Yes, I only use Mestinon. As long as I am CAREFUL about everything else, the Mesty has kept me going. Can't use immune suppressants due to cancer running in my family. |
Immunosuppresants do make me nervous for that and many other reasons.. but if need be I'll do them... I am sick enough as is with the kids bringing home germs at this point though!
funny you say that about the frying of the brain!! I have said that many times- I sware I get a little dumber each time I have gotten meningitis!! I have the worst brain fog during those times, its really really strange!!!! I will be curious if they will let me try mestinon as a trial in the near future.. I just worry about the long term effects of my body on IVIG.. esp since my body does seem to have an allergy at some level to it! |
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