New to the group....again

[Guest guest]

Hi, I had originally joined the group several years ago and then I

dropped out for awhile. Now I am back. Wasn't sure if mito was the

right directions but now I am really starting to wonder. I am 38

yrs old, have been disabled for 11 years without a dx and am

(natural) Mom to a 12 year old daughter. History is MOSTLY: muscle

spasms, muscle twitches, fevers, headaches, exercise intolerance,

raynaulds, brain fog, muscle stiffness,extreme fatigue and just

feeling like crap....not depressed. Realized last year that I had

atrophy in the butt...on the side, by the hip. Neuro had also seen

it. Now went to my truly wonderful family dr who said it is now in

my hands and wrists. It is time to look again for answers.

Previous testing has been every test imaginable: mri, mra, mrs, ct,

spinal, evoked potentials, the exercise test for myastania gravis,

emg's, single fiber biopsy and two open muscle biopsies (frozen).

In the past 2 years I have been dx'ed with IBS, lactose intolerance,

hiatel hernia and 2 herniated discs in the thoracic area (which is

uncommon). Can't help but wonder with the atrophy showing on the

outside (alot of these conditions deal with muscles) what is going

on in the inside.

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

in the urine over the past 3 yrs. However sometimes the dr says I

have blood in the urine from the dipsticks done in the office, but

when lab is done, it is fine. When I questioned her on it and the

possibility that it is not blood, but muscle wasting she is

detecting she said she has the dipsticks that show leukocytes and

that they are up also. (CPK's are always fine) Usually I have no

other symptoms other than just feeling really, really bad.

My last biopsy was done over two years ago. It was ordered by a

neuro that had been recommended by UMDF because he had several mito

patients. He stated that the results showed 2 ragged red fibers,

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

I have seen the postings on the fresh vs frozen and did ?? the neuro

on it before having the last biopsy done. I remember the debate

years ago on here. I also remember, I BELIEVE it is F. that

has had like 3 frozen and then when she got the fresh biopsy done

she was finally dx'ed. (hope this is right after all these years)

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?

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.

I have not seen any neuro for 2 years. Just felt that I was not

getting any answers and just wasting my time. I had found a good

family dr, but now with the atrophy I need to do something. Is

there anyone at Cleveland Clinic seeing adult patients?? Or anyone

in the Pittsburgh area?

Thanks for any suggestions or thoughts that may be offered!!!!!

[Guest guest]

> 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

[Guest guest]

Thanks for all of the imput RH.

I haven't tried acidophilus...will look into it.

2 ragged red fibers.......well, that was my thoughts!!! That is why

I was asking. I thought none was normal and ANY would be mito.

Usually I do get all med. records, but have sloughed off lately.

Just got fed up. Radiologist that did MRS was not looking for mito,

but cause of headaches. Actually think this is new (MRS) to him and

he doesn't totally understand everything. I will DEFINITELY get the

report to see what I can decipher. I am also in the process of

requesting the muscle biopsy report.

blood lactate/pyruvate levels were checked while looking for

myasthenia gravis...normal.

Every other disease imaginable has been ruled out, ALS, MS,

Myasthenia Gravis, RH, Srogren's....etc, etc.

I just feel that more is presenting themselves through the atrophy

and testing if I can find the right dr. to piece it together. We do

have a MDA Clinic in Pittsburgh, but it is through Presby Hospital

and I have seen 2 of the dr's a few years ago and was not impressed

with them at all. Called about the third dr. there but his

specialty is ALS and myasthenia so he has to review my info to see

if he will even see me. He has done some emg's and single fiber

biopsy on me and just very thorough. Thought if someone at

Cleveland is dealing with adult mito I would be better off there.

Thanks again...I have forgotten how nice it is to " bounce " things

off of others that understand.

>

> > 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

>

[Guest guest]

> We do have a MDA Clinic in Pittsburgh, but it is through Presby

> Hospital and I have seen 2 of the dr's a few years ago and was not

> impressed with them at all. Called about the third dr. there but

> his specialty is ALS and myasthenia so he has to review my info to

> see if he will even see me. He has done some emg's and single fiber

> biopsy on me and just very thorough. Thought if someone at

> Cleveland is dealing with adult mito I would be better off there.

Two points: one is that I went to three MDA clinic in my area and two

had doctors who just really didn't believe I was ill, and the other

continued to think my incorrect MG dx was correct. I finally went to

this fourth MDA clinic, and their neuro has been my mito doc for five

years now.

Second point is that she specializes in ALS, and to a much lesser

extent mito, so maybe give the MG/ALS specialist a chance. I went to

a MS specialist, and she had never heard of any but the most common

mito, and that kids get very ill from it (never heard of it in adults).

Take care,

RH