pulmo's, neuro's and triglycerides (oh my)

[Guest guest]

OK recently inspired by " tin man "

I went to the neurologist earlier this week. He is the

head of the MDA chapter here in Memphis. I haven't had

a lot of luck with MDA neurologists. He is the Dr all

of the other neuro's were consulting with though, so I

figured I would just cut out the middle man and see

him. He had my chart in hand and did not seem to

understand the sleep study results. He just read up to

the part that said I only had mild obstructive apnea.

I really don't have central apnea, if I did I could

possibly reverse it. What the study proved was that my

diaphragm wasn't working and my oxygen went down to

83. Even with oxygen and or a bipap I never, ever went

into rem sleep. I remember another doctor finding this

out before I was put on fentanyl (this Dr wants to

blame the fentanyl) The problem is that if the Dr is

misreading my results then he won't try very hard to

help because he thinks I am OK. My sleep study doctor

promised to call him to make sure everything was

understood. The neuro did order some tests, course

they can be affected by Prednisone and am still on

20 of that. He also ordered a sniff test, I think I

had it done in Cleveland,also should have been in

his chart. He is talking about doing a muscle biopsy.

I really don't want any more cutting,the nerve biopsy

got very infected,but if I don't agree to the

diagnostics then they can't do very much. He also

patted me on the hand and told me there was no way I

had ALS,another MDA doctor did nearly the exact same

thing when I first inquired about CMT. He said there

was no way I had a neuromuscular disease because I had

reflexes.

My sleep study Dr visit went well. I am getting a full

face mask to go along with the nose one because I get

very congested. They are going to do an at home ox sat

test while on the bipap to see if i need O2 at home

and to see if I need the next level up bipap. The

newer bipap has a fail safe if I do not take a breath

in. They also bumped me up to 10 and 6 which is nicer.

I am still struggling with breathing. It's hard to

teach class, the kids, do crafts, celebrate the

holidays and make special meals when all I want to do

is crawl on the couch and sleep!!

I asked about Provigil (sp?) he decided he didn't

want me on it yet. He wanted me to try Lyrica again.

we'll see what happens,more than likely the same

result? isn't that the definition of insanity? doing

the same things and expecting different results?

I just got blood work back. My total cholesterol level

went down a bit but its still very high. My

triglycerides were over 550. They went up while on

lipitor for 2 months. I find that very strange. I

haven't taken the statin yet that the internal medicine

doctor gave me mainly because the pulmonary Dr wants

me checked for pulmonary hypertension and suggested a

possible cardiac cath. I guess I will find out the

plan when I go! Thanks in advance for any info!!!

Thanks again for this group!!!!

Lenore in Memphis