Barbara

[Guest guest]

Hey, is this really you Barbara? How are you feeling?

Barbara Seaman wrote:

>FYI

>

>http://www.neuro.wustl.edu/neuromuscular/mother/myotox.htm

>Toxic myopathies

>

>http://www.spiralnotebook.org/justsayno/index.html

>Lists of drugs reported to trigger muscle breakdown. (Scroll down)

>

>

>Cohen et al on surgery/drugs as mito trigger:

>•As a general rule, patients with mitochondrial cytopathies are at greater

risk than unaffected people for side effects of some medications. Although some

medications may interfere with energy metabolism to some degree, complications

are usually related to the clinical condition of the patient prior to surgery.

>

>•The adverse events [following surgery] reported include new neurologic

problems such a strokes, worsening of the overall neurologic status, respiratory

difficulties, seizures, cardiac arrhythmias, prolonged coma and death.

>

>The risk of respiratory failure and worsening of neurologic function is often

noted in patients with mitochondrial cytopathies after “stressfulâ€

illnesses, including infections such as viral or pneumonia. Infections may be

associated with surgical procedures, either as a complication of surgery or as

the need for surgery, as in the case of a ruptured appendix. Infections, such as

the common cold, can also occur randomly around the time of surgery. Certainly

surgery itself, even if for a non-emergency condition, is a major stress. The

following discussion is quite complicated but necessary in order to understand

that anesthetic drugs alone should not be considered the only element in leading

to these adverse outcomes. During infections, the body responds by making

chemicals known as cytokines. Cytokines help the body fight infection, and are

also responsible for the fever, aches, chills and the overall “rottenâ€

feeling we get when we are ill. Cytokines induce the formation of nitric oxide.

Nitric oxide (the chemical formula is Nï2) is a powerful oxidant with many

useful purposes in our bodies, some of which seem quite unrelated, such as

forming new memories and killing bacteria. However, nitric oxide inhibits

cis-acotinase (a citric acid cycle enzyme) and the iron-containing cytochromes

of the respiratory chain. Therefore, Nïin high amounts may decrease

energy production, which is ill-afforded in patients who already have an

impaired ability to generate energy. Nitric oxide can also interact with other

chemicals in the body that result in damage to the mitochondrial DNA and

mitochondrial structure itself. One cytokine known as tumor necrosis factor

(TNF), is known to be released by the body during surgery, and is also known to

be a potent inhibitor of complex III. TNF has many essential functions, and

serves as a natural defense against infections and cancer. In otherwise healthy

people, the inhibitory effect on complex III is obviously not harmful, but may

play some role in people with mitochondrial diseases, who are not able to

tolerate any small decrement in mitochondrial function. Therefore, anesthetic

agents may not be responsible, at least without additional factors, for causing

neurologic deterioration. Both the stress of surgery as well as any associated

infections may trigger the events leading to a deterioration in susceptible

patients. (Anesthesiology 1997;87:420-5)

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>> Re: Mito Trigger?

>>

>>

>>HI, Heidi and everyone,

>>

>>I am glad you are on your way to getting a diagnosis and starting the

>>mito cocktail. I am particularly interested in the theory about the

>>origin of your sudden terrible muscle problems. You said it was the

>>metformin that could have triggered a drug reaction. I am curious -

>>how did you come to that conclusion? If a doc suggested it, did he say

>>if there were other drugs that are known to trigger mito? The reason

>>that I ask is that I have always felt that something triggered my

>>condtion to get a lot worse, at the time of my spinal surgery. I am

>>not sure what it was, because I was on so many meds at the time.

>>

>>Have others here had the experience of sudden triggers unmasking the

>>mito, or making the symptoms a lot worse suddenly? I strongly feel

>>that might be the case with some of us. Then of course, the

>>intriguing question is, what were the triggers?

>>

>>Regards

>>

>>Sunny

>>

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>>> 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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>>>

>>>

>>>