Re: Thanks for the welcome!

[Guest guest]

Kathleen

Muscle fitique and cramping are very, very common in mito. They are

due to using up all the energy in the muscles and nerves that control

the muscles. I have severe cramping, but don't usually until anywhere

from a few hours or even two days later. Cramps can be caused by many

other things. My kidneys are not hanging on to the minerals like they

are suppose to, so keeping my electrolytes in balance is extremely

important.

Ramble all you want. You need to ask whatever you want. We, as a

group, have discussed some really personal stuff, so don't think that

any question is silly. The same question has probably already been

asked by someone or should be.

I know the frustration of getting a diagnosis. It took me 15 years, 5

muscle biopsies and a trip to Atlanta to finally get to the point I

could grieve and accept and learn. For me, knowledge has been the most

important for me to deal. For others, the less they know the better. I

don't think we have any of those folks on . :-)

laurie

> Laurie, a, Joanne, Barb-

>

> Thanks for your info and kind words. I really don't think I had symptoms

> until I hit 30. I've

> been looking at pictures, and my eyes seem normal up until my first wedding

> anniversary,

> and then it seemed like the progression was very quick, but limited. Other

> than one more

> burst of destruction in my left lid, both the ptosis and eye muscle

> immobility seem to have

> pretty much stopped.

>

> Up until that time I ran, swam (went to nationals in college), did long

> distance biking and

> rowed on the crew team. I stopped being so athletic because I finally got

> done with all my

> schooling, got a real job, and became obsessed with earing enough money to

> buy a house

>

> It seems like things are accelerating now, and I find myself praying that

> I'm being a

> hypochondriac, and feeling things because I'm reading about symptoms. I do

> know some

> of the tiredness and muscle cramping is related to the hypothryroid

> problem, but don't

> know if that is caused by mito or a parallel disease. I can't explain the

> muscle wasting

>

> Right now, other than the fact that I have not yet seen anyone who actually

> knows

> anything about mito, I am most frustrated by how slowly the bureacracy

> works. Every

> appointment takes 2-3 months to get, there are mess ups with lab results,

> and since the

> docs clearly don't know anything about mito, they seem a pretty cavalier

> about it all.

>

> I'm sure this list does know more than most docs, and I am deeply grateful

> to have found

> it, and to the folks who run it.

>

> Blessings to you all,

>

> Kathleen

>

> PS if i'm running on at the mouth here, I apologise. I've been trying to

> hold it together for

> my husband and family, and all I've read in research is enough to scare me

> silly. It is a

> huge relief to talk to real people who know what I'm dealing with and going

> through, and

> aren't in an even worse place knowledge-wise than me.

>

> Thanks again, K

>

>

>

>

>

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