THANK YOU and more

[Guest guest]

{{{{{{Vicki}}}}}}} Just wanna kiss your cheeks for " getting into " this

with me!!! I really sometimes wonder if my pension for research and too

much medical knowledge doesn't make me a real pain to everyone.....LOL.

THANK YOU for looking with me and trying to figure all of this out. The

sites were great (that dermatology site was a gem!!!).

Annette...you must be a glutton for punishment to find all of this mess

interesting enough to even read!!! LOL I feel like I have kind of come

into the group and run rough shod over everyone with all my putting my

thoughts down on paper, and just SO appreciate you letting me know that

atleast a few others weren't thinking I have just lost my mind<grin>.

No one has mentioned a MCT disease, although, both my daughter and son

are extremely hyperflexible, with my daughter being considered

severe....she really just hangs on all of her joints (oh yeah, we have

years of pain in store for her and yet not a thing we can do about it).

She pains me when she points at something her arm hangs so badly on her

elbow joint. So, at this point we assume we have a rather unusual

manifestation in the mito disease world, not unheard of, and since this

disease can affect any body system not out of the realm of possibility,

just not something thats seen that often. So....it seems as though

there is always this possibility. I am gonna have to do some more

research on them now, you have gotten my curiosity peaked :-) THANKS

for the support hun.

...thanks so much for the support, it really does mean the world

to me. Having you all here to just listen is making this alot more

bearable to deal with. THANK YOU for that.

Now...I mentioned in my title that there was " more " , so here it is

friends..........

On the positive side of things, I called this morning to see about

getting into UT Southwestern to the neuromuscular doc that I had gotten

a referral to see (supposed to be one of the tops in the country/world)

and they called this afternoon and have me set up to come in on the 18th

of September. I was not here to get the call, so will call and see

about getting on their cancellation list on Monday, share a bit of whats

going on, and see if they won't have pity on me....LOL.

On the negative side of things, I came as close as I ever have to

passing out this morning, for no apparent reason. I actually had a

reasonably good nights sleep for the first time in weeks last night, and

got up this morning to do a minimum amount of help getting my son off to

school with my hubby. I was rested so sat down at the puter and was

working on things here, while the girls slept. Nine rolled around and I

made some calls I needed to, and marveled that the girls were still

sleeping (we have been fighting a cold in both around here all week and

this was the first morning they really had a chance to sleep in so I was

content to let them...LOL). I have been being religious about getting

up, eating a little something (not really a breakfast person generally)

and then taking my meds by 9-10 each morning, but got side tracked this

morning and didn't even realize it was approaching 11 as I was chatting

with my mom on the phone (she was on her way into town to take the kids

for the afternoon). Anyway....I am sitting here, having gotten up a few

minutes before to throw something away, listening to my mom when all of

a sudden I am feeling a little quesy, and I start to go " numb " for lack

of a better word for it, starting with my head and going throughout my

whole body, and then start feeling myself slip into unconsciousness. At

this point, I was thankfully able to tell my mom what was happening and

she was only 5 or so minutes from the house and was fast on her way.

At this point, I am on the edge of being conscious, and apparently not

real clear headed because I got up and started trying to get the girls

dressed and ready to go (DUH). Lasted for about 3 minutes, and then,

all clammy and sweaty I began coming out of it and was okay by the time

mom got here, just shaky. It scared the bejeezus out of me!!!! I

immediatly called my doctor, and headed out with my mom towards the

hospital (if he was gonna tell me to head that way) and towards her

place here in town to stay for the day if he did not. On the way, I

started having the left shoulder blade/down into the arm pain I had been

having when I went to the hospital before, called the doc to let his

nurse know this too...and just felt very " fogged " in the head. The doc

did not call for HOURS!!! I went to my moms and slept for a little

while, waking feeling still very fogged and just not right, with some

residual achyness in my shoulder. I took my meds after eating something

when we got there, and ate normally for the rest of the day, but am

still shaky and feeling really heavy in my head (have a nice head ache

brewing tonight too).

So, the doc calls and basically says its the Prednisone, that I am just

gonna have to " deal with it " (easy for him to say, he is not a mom of

three that have to have mom conscious), and that this is why he is

trying to get me down off the Prednisone so quickly. Has ANYONE else

had an issue with passing out due to the Prednisone???? I have looked

and am just not finding anything that says this is even a rare side

effect. He did not want to see me, was not at all concerned about what

was happening, and just basically treated it as no big deal....just

something to expect. In the meantime, I am sitting here wondering how

the heck I am gonna have a normal life if I am unable to ever be alone

with my kids, and with mine so young, its not like they would know what

to do if mom passed out in front of them!!! This has really shaken me

to the core....I honestly don't know that I would have been able to call

someone this morning, just happened to be blessed to be on the phone

with mom at the time. Not to mention that I just have that gut feeling

that something is " not right " ...not sure what exactly, but I feel horrid

today and I have not been feeling this way at all before now.

So, that was my not so fun day today and I am now sitting here trying to

figure out what in the world I am gonna do next week when hubby has to

be at work. I just really don't know. Anxious to get anyone's feedback

that might have dealt with this...its SUCH a disturbing way to feel!!!!

Thanks again for the support and help!!!

BIG hugs,