update

[Guest guest]

hi guys,

Havent posted here in awhile! I miss you guys and think of yall

often, try and read the posts here and there, but just havent had the

energy to respond really, but decided I would just say hi to everyone

(new and old). I've been doing fairly ok the past few months, I

havent been in the hospital since mid Oct which has been the longest

I've gone all year! I had my line taken out back then and am having

alot of probs due to that, but they wanted to take it out because of

the number of infections I had been getting, my last one caused an

SLE that is causing some problems again with weakness on my left

side, foot drop, double vision and an increase in migraines. I also

went seizure free for a few wks recently which was nice. My GI probs

were alot better till the past few days. Main problems I am having

with now is autonomic though, I really need to find something to

help, florinef isnt doing its job. I was recently put on toprol xl (a

beta blocker) in hopes that it would help stablize my heart rate and

also help my heart function better. I am very confused with some

recent tests about my heart- some of them point to heart failure (2

do) while another one doesnt. I need to see my cardiologist about

this, I was unaware of these tests being done and didnt get them till

recently. I was also diagnosed with hyperparathyroidism which I saw

allison brought up (BTW allison, been praying for you alot, know

youve been through alot). I dont know what is going to be done about

it though. Also, found out that my pancreas is doing some weird

things, making very little amylase and too much lipase, not sure if

its pancreatitis or what. I know I'm having the symptoms of it

though. I was recently taken off narcotics for my pain and drs

switched my antidepressant to cymbalta and one of my seizure meds

over to lyrica in hopes they would help my neuropathy and migraines

especially, havent seen much results yet though. As for the other big

problem I have been having, my lungs, I am still having alot of

problems with SOB and pleural pain and also found that my respiratory

muscles are extremely weak (dr was suprised how low my MIPs and MEPs

were), going to get a bipap later this month, have just been using O2

as needed for now. Anyways, I also so dr korson in Nov along with 4

other specialists, was a great trip. I am going back up there early

feb. for some GI tests, to see a cardiologist and to see 2 other

specialists that i saw while i was up there before. Then hopefully

going back up to see dr korson in the spring and maybe a neuro then

too. Anyways, would be nice to meet anyone else going up there at the

same time. Will keep yall posted on that. Prayers going out to

everyone and hope everyone has a good holiday.

take care,

Adrienne

MELAS phenotype- complexes 1, 3, and 4