Re: Mito Trigger?

[Guest guest]

Hi Donna,

I was taking Simvastatin at the time and had been for ages when i

had the biopsy...Simvastatin is what they give here in the UK the cheapest statin...

After stopping it I noticed roughly 3 weeks later I was not as

floppy/wobbly and stopped getting dark brown uggh urine which

happened frequently etc...things gradualy improved a lot for me...

I have now been put on Avorstatin your US name Lipitor and am

beginning to feel horrible again,I dare not stop it as I was told to

take it by of all people my mito. doc due to serious cholestral

trouble..

I have done what patients shouldn't do and googled Lipitor and don't

like what I read about it..I never had stomach cramps till about 3

weeks after taking it...

I undersatnd from reading as a LAYPERSON that they think that

ALS/Parkinsons/Alzeimrs and many other neuro illness MAY have a

mitochondrial malfunction component...

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.

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > Medical advice, information, opinions, data and statements

> > > contained

> > > > > herein are not necessarily those of the list moderators.

The

> > > author of

> > > > > this e mail is entirely responsible for its content. List

> > > members are

> > > > > reminded of their responsibility to evaluate the content

of

> > the

> > > > > postings and consult with their physicians regarding

changes

> > in

> > > their

> > > > > own treatment.

> > > > >

> > > > > Personal attacks are not permitted on the list and anyone

who

> > > sends

> > > > > one is automatically moderated or removed depending on the

> > > severity of

> > > > > the attack.

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >