Re: Mito Trigger?/Sunny

[Guest guest]

Hi Sunny,

Yes after reading some of the recent posts these antibodies do seem

to like attacking us don't they..I wish that I understood these

bloods that are positive..on the autoimmune type area and how they

relate to our mito..

Gillian-

-- In , z39z@a... wrote:

> Interesting, Gillian.

>

> I have a consistent positive RA factor - I run 150 - 180, when

under

> 20 is normal. - it was 600 years ago, after my second surgery, and

I do

> not have RA.

>

>

>

>

> >

> > This is very interesting.I had to have gynae surgery 8 years ago

> > before my Mito. diagnosis, often this type of surgery is done

using

> > an epidural these days..We were told afterwards that they had

failed

> > to do it that way because they could not 'get in' to place the

> > anathaestic, 4 years later they did an MRI of my lumbar spine

and

> > found 'degenerative discs' which explained apparently the

epidural

> > problem..as a result of this some Consultant has put on my file

NO

> > CSF to be attempted, I don't really understand it all to be

> > honest...but I do know that they also found autoimmune

rheumatoid

> > antibodies using 2 different screening methods..

> >

> > Gillian

> >

> >

> > > >

> > > > >

> > > > >  So, last week I received a clinical dx of mito from both

> > neuro

> > > and

> > > > >  metabolics.  So I guess I'm in the right place.  Neuro

said

> > that

> > > I

> > > > >  don't have MS and my brain MRI shows no evidence of

stroke so

> > the

> > > > >  episodes could have been SLE's.  Bloodwork and exam show

> > muscle

> > > > >  disease. Carnitine deficiency plus other body systems and

> > funky

> > > labs

> > > > >  plus family hx give enough weight to a clinical dx. Labs

for

> > DNA

> > > and

> > > > >  other funky things were drawn Monday so we'll see what

comes

> > out

> > > of

> > > > >  it.  I may go down to Atlanta for a muscle bx if we don't

> > find

> > > it in

> > > > >  blood.  Not sure if it's dominant or maternally inherited

> > > because ther

> > > > >  are shockingly few boys in the family.  Several

stillbirths

> > and

> > > > >  miscarriages that were boys though.  Go figure.

> > > > >

> > > > >  The theory about the sudden terrible muscle problems is

> > this: 

> > > I've

> > > > > had

> > > > >  this underlying myopathy all my life, since you can't

change

> > your

> > > > >  genes.  I've compensated well most of the time but the

drug

> > > reaction

> > > > > to

> > > > >  metformin (which happens in people with mito, go figure)

> > > destroyed

> > > > >  healthy muscle and left me with more abnormal, affected

> > muscle

> > > trying

> > > > >  to do the job.  So now I need to find out how to

condition

> > this

> > > lousy

> > > > >  muscle and get on with life.  I have PT and OT evals next

> > week. 

> > > I'll

> > > > >  have a hearing test, a neuro-ophthalmology exam, and a

sleep

> > > study. 

> > > > > It

> > > > >  will make for some busy weeks but we'll get more info.  I

> > really

> > > need

> > > > >  to figure out if this will be a short-term thing or if I

> > should

> > > try to

> > > > >  modify my work  (although right now I can't write so I

can't

> > > work at

> > > > >  all).

> > > > >

> > > > >  The diabetes is under control with insulin 4 times a day

and

> > > blood

> > > > >  sugar checks 4-7 times a day.  Still waiting for the

blood

> > work

> > > to see

> > > > >  if it's type 1 or2. 

> > > > >

> > > > >  Heidi

> > > > >

> > > > >  So now I have an appt with Dr. Sims at MGH.  I've heard

> > > conflicting

> > > > >  reviews but hopefully it won't be a waste of time.

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

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