Re: Re: New to the group....again---MRI SPECTROPSKY

[Guest guest]

I have been diagnosed with MELAS via blood test and have mild symptoms. My

sister was diagnosed in 1996 both via blood test and muscle biopsy when she went

into a coma shortly after the blood was sent for testing. I can give you our

symptoms in regard to some of your questions. As suggested I would get a copy

of your report--you are entitled to it. I believe in most states though they

are allowed to charge a copying fee. I need to get a copy of mine from 1997 done

at a hospital two hrs away from where we live. No excuse and maybe this will

motivate me.

> He stated that the results showed 2 ragged red fibers,

> but it was not enough to be considered mito....ANY THOUGHTS??

FROM RH---

Um, I think ZERO is considered normal, and more is considered mito.

Then again, I don't have RRF (per fresh muscle biopsy), and I have

MELAS phenotype, Complex I deficiency (again by fresh muscle biopsy)

mitochondrial disease.

> Recently I had a MR spectroscopy. The radiologist was amazed he

> said that the chemical analysis part showed that my chemicals are

> 1/3 of what they should be.....ANY THOUGHTS?

My sister who was more affected then myself, although she had different

symptoms, had seizures and a stroke, and overall muscle weakness. The first

time she had a seizure (the kind where you shake) was in 1994 and went into a 4

day coma. She was find afterwards, doctors thought she had ancephalitis. Feb

1996 she did it again but this time had a new doc who decided to pursue this.

Her doctors found a pediatrician who had studied in California and knew of these

things. Her blood was sent for testing. Meanwhile a couple of weeks later she

suffered a stroke--recovered enough to be walking and traveling. A week or two

later another 10 hours of uncontrolled seizures and a drug induced coma for two

weeks.

She showed no ragged red fibers on her muscle biopsy. She had confirmed MELAS

and died Oct 1996--8 months after the second 4 day coma. When she was in the

coma in July she was started on DCA experimental med to lower lactic acid and

the vitamin supplements. They did help her to come out of the coma and she was

alert and cutting strawberries on Aug 19, her birthday. But they were too

little too late and she tried to do much I believe.

As far a a MRI Spectropsky, I had one done in 1997 after a genetic blood tested

confirmed MELAS. I have mild symptoms such as blood sugar that goes up with

physical exercise, the opposite of " normal " diabetics; some numbness on the top

of my one foot; exercise intolerance and general overall fatique and I get the

mito fog.

We did mine to establish a baseline for what the doc said " in case all H***

breaks loose " , like it did with my sister. One minute appearing fine although

she was in a coma about a month before that and next thing she has a stroke, is

up and traveling although some lingering signs with her speach and dragging one

limb. Next thing she is having seizurees they cannot control while on anti

seizure med. This doc is rather unique in his approach.

Anyway, I do not have a copy of the report and unfortunately when I went to meet

with the neurologist who did the study we were waiting for the other doc who got

caught in traffic on the other side of town. Anyway, she told me that it showed

signs of seizures. She said something about white spots.

I have never been down to her again although a few people on the other mito list

see her. Where she practices is 2 hrs from me and kind of inconvenient. I am

sure there is a copy in my file at the other docs office even though he is two

hrs away also I generally see him at least once a year. He is off the

interstate that is easier for me to get to.

I believe that the evidence of seizures she was talking about are about 4 times

in my life when I can remember waking up and the people around me have told me I

have fainted. My mother was on anti seizure med from 1975 until 1988. She

would often " faint " and fall to the floor. She only had one seizure where her

arm was shaking. That is before she died in 1988 but a scan showed she had had

multiple seizures. I believe these are now called drop down seizures? My son

also has " abscence " seizures where he just stares, like he is spaced out on

drugs or something.

Of course mito often causes bad headaches according to the neurologist in

Milwaukee who is also very knowlegeable about mito.

Re: New to the group....again

> I have also dealt with alot of bladder infections/cystitis and

> blood in the urine over the past 3 yrs.

Have you taken acidophilus? It sometimes helps with bladder

infections as it repopulates the good bacteria.

> He stated that the results showed 2 ragged red fibers,

> but it was not enough to be considered mito....ANY THOUGHTS??

Um, I think ZERO is considered normal, and more is considered mito.

Then again, I don't have RRF (per fresh muscle biopsy), and I have

MELAS phenotype, Complex I deficiency (again by fresh muscle biopsy)

mitochondrial disease.

> Recently I had a MR spectroscopy. The radiologist was amazed he

> said that the chemical analysis part showed that my chemicals are

> 1/3 of what they should be.....ANY THOUGHTS?

MR SPECT is pretty specific - they should be able say more than

that " your chemicals " are decreased. For example, the MR SPECT found

my lactate levels were abnormally high in various areas of the

brain. MR SPECT allows the technician to " tune " the instrument to

various chemicals, but which ones are high and which ones are low is

important in the analysis.

Have you had your blood lactate/pyruvate levels tested?

> He felt that it basically said that I have headaches. I questioned

> him if it had anything to do with Mito or the metabolic state of

> things, he said no. I cannot find much info on what this test is,

> but did read somewhere that it is a good tool for helping to

> diagnose mito.

May I suggest that you request a copy of the report? It is important

to keep copies of all of your records with you in case you want to go

to a new specialist (which many of us continually do LOL).

I am sorry you are going through this, have they ruled out ALS? How

about going to an MDA clinic?

Take care,

RH

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