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7:40pm April 20, 2015

bittersnurr:

familiaralien replied to your post: “like am I wrong? am I not that sick? I feel pretty sick?? Because I…”:
tbh sometimes you transcend bad that doctors are like “ok just… don’t die because nothing I can give u will help at this point u r just a mess” <- me with mental illness.

but that isn’t true. There are plenty of things left I have suggested some.

Ex. people I know get saline iv infusions for low blood pressure and it’s a pretty standard thing for mito it seems. But I was told it is “too dangerous” (note: this is WATER not medicine it is water with electrolytes) and Dr. Korson suggested ivig before he left, that’s apparently also too dangerous.

So I am not sick enough for them to be comfortable giving me things that might work due to the risks. But at the same time are treating me like there are no other options left.

There are other options they just don’t want to do them themselves.

IVIG is how I got meningitis last summer.  But it’s still worth a shot, especially with precautions.  But if you’re prone to migraines it apparently makes you more prone to the meningitis reaction.  Not wanting to scare you out of trying if you get the chance, though.  My life would’ve been so much easier if that had worked.

But the people on the neuro ward were so amazing to me I still have to write them a thank-you note.

Notes:
  1. wittgensteins-beetle said: I was told that routine saline can get risky with infections, but it was fine as an emergency (i.e. infrequent) measure. (Also, like, if you tell your doctor you’re aware of the risk they should give it to you anyway)
  2. bittersnurr reblogged this from withasmoothroundstone and added:
    yeah I am aware of the infection risk for it.it would still be nice to at least have the option to try though,...
  3. withasmoothroundstone reblogged this from bittersnurr and added:
    IVIG is how I got meningitis last summer. But it’s still worth a shot, especially with precautions. But if you’re prone...
  4. littlealiengirl said: Did they give you a reason saline is supposedly dangerous? Because with your bp I am pretty sure NOT giving you something like that this point is the dangerous option.
  5. slashmarks said: is it just me or are your doctors like exceptionally bad