Re: LYNN- MRI/MRA questions-frustrated

[Guest guest]

First, have you been on the Mito list for long? If not welcome to our group.. I haven't been on the hemi-list for quite a long time. If you haven't been here long then you probably don't know what all has been happening with Asenath. She has been going to Mayo Clinic in Rochester, Minnesota since last December and seeing Dr. Whiteman (geneticist) and Dr. Renaud (neurologist-a female) since then. Asenath has had many problems since I was on the hemi list last fall. She continued to have more strokes and Mito became a reality. Then, since strokes continued to happen, Asenath had a MRI/MRA/MRS in August revealing that her 1 narrow artery from last year had now become 4 narrow arteries. This gave her the diagnosis of also having vasculitis, which at this time is her most deadly opponent. She just had another MRI/MRA which you read me having questions about. The doctors did compare her past scans with the current ones and so are very aware of any changes that have occurred. Unfortunately the atrophy is new, but as one person on this list suggested, it could be the result of steroid use which she has been on for more than 3 months now at a high rate. Since Asenath is being watched for the vasculitis and treatment is underway, she will be having MRI/MRA's regularly, one of which is scheduled for about 5 months from now. I also wanted to let you know just in case you thought it, that Asenath does not have cerebral palsy. All the damage that she has had has been a result of strokes from her vasculitis and Mitochondrial disorder. Unfortunately, with the vasculitis she has the probability of having further strokes. The steroids are being given to her in hopes that her narrow arteries will open and new ones will not happen. I would love to hear more about your son and what all you have been through. Feel free to ask me about anything else you have questions about. Thanks for your note. Darla: mommy to Asenath (3) Probable MNGIE, vasculitis of the brain, strokes, bi-hemi w/ DAFO's, sleep disorders (apnea, breathing irregularities, heart rate irregularities, O2 use at night), speech/cognitive issues, steroid use currently for treatment... plus the other 8 munskins ages 15, 13, 11, 9, 7, 2, 2, and 8 weeks. Re: MRI?MRA questions-frustrated > AND that there is a new finding. It seems that there is a moderate diffuse cerebral and cerebellar atrophy happening.Darla, you have been a real inspiration to me, while I try to figure out what is going on with my own son. You posted on the hk list about Asenath having mito, and that got me looking at new things for my son. I think about you both a lot, and hope that Asenath is doing well.In the meantime I've been doing tons of homework to figure out what is maybe going on with my son, what doctors to seek out, and so forth.Atrophy basicly just means that there has been some damage, and the brain is getting rid of the parts that don't work anymore. It doesn't really mean anything on its own.Has Asenath had an MRI before this one? If so, you would need to compare them. You might even ask for a doctor to compare the two films - you can have them do that. Especially if two different doctors interpreted her different films, you may have the SAME thing on both, but it was called differently by the different doctors. Maybe one thought it was a problem, and the other hadn't.If there really has been a change, then you will want to have another MRI done in 6-12 months, to see if there are any more changes. That's because there hasn't necessarily been any changes since the first MRI - it's possible that the damaged areas just are showing up more now than they did before.If it is from something new, then you'll want to figure out if it came from something that happened one time, or something that is still happening, or something that might happen again in the future (and what those odds are, and what can be done to help avoid it).In my son's case, whatever he has is probably progressive, but he does not show any atrophy on his MRI. Lots of kids with cerebral palsy DO have atrophy on their MRI's, despite NOT having a progressive condition.So - the important thing, in understanding this new info, is to find out more about when the atrophy occurred and if it's an ongoing concern, or a thing of the past. Just having it is not necessarily a big deal. But I know if it were me, I would want to be absolutely sure of whatever it was.If you can, maybe you could talk to Asenath's neurologist and find out what his thinking is about this. It's possible he forgot to mention it because he looked at the info well before the appointment, and then skimmed during it. Or he may not have considered it to be significant.I hope this helps.LynnePlease contact mito-owner with any problems or questions.

[Guest guest]

> First, have you been on the Mito list for long? If not welcome to our

group..

Thanks! I have popped in to the mito list to check mail every now and then, for

awhile - maybe once every few months I would skim

the subject lines on the homepage with the first 5 posts, but that was about it.

But haven't really kept up on this list or posted much

at all - just once in the beginning. I read the list carefully for a week or

two in the beginning, and caught a little of what was going on

with Asenath, either then or soon after, but I didn't know everything you

mentioned. I did get the impression that you had found what

was the matter, and things were getting done about it. That was the inspiring

part. You don't seem SO lost like I still do! :-)

When you last posted on the hk list, which indeed was quite awhile ago - and was

about Asenath having mito and not cp - I had been

thinking for a bit that Jericho's case sounded more like Asenath's, and not like

everyone else on that list. He seemed to develop new

problems that others did not, and he seemed to recover from them after only

weeks or months, where others did not. However, his

symptoms generally take longer to change than I remember Asenath's doing, on the

hk list.

I joined the mito list back then, when you posted about the mito to the hk list,

to get a feel for whether Jericho might have mito, too.

But after asking some questions and reading a little, I didn't feel like he did.

I still feel like it is an unlikely diagnosis for him, but since

it came up on a recent report (possibility of MELAS), I wanted to check into it

more carefully again.

It is really looking like Jericho probably has multiple sclerosis. The

neurologist who specializes in that is supposed to call me soon,

and the wait is killing me. :-) Jericho has been having swallowing trouble for

over 2 months now. The neuro-opthamologist felt he

most likely has MS, and said if he gets diagnosed soon, he could get IV steroids

to try to end this episode sooner. So I have been

hoping for that. I don't want him in the hospital for Christmas, but I would

love to know before Christmas, whether he has the MS or

not. Well, especially if he does have it. But mostly I'm just hoping to have a

way to end this episode as soon as possible.

There was talk last month of a g-tube for Jericho, and his OT still thinks it

may help, since he hasn't been getting enough fluids. She

thinks that he is in something of a vicious circle, with neurological problems

(dysphagia) leading to mild, chronic dehydration, which in

turn keeps the neurological stuff happening. I'm really hoping we can avoid a

g-tube for a long time to come. It does look like he will

need one eventually, but I'd rather put it off as long as possible.

You mentioned vasculitis, and that is something the neuro said he might look

into for Jericho. My MIL had vasculitis, which did not

show up on her MRI, but was found via a brain biopsy. For her, the steroid

treatment was oral steroids for only one month. I thought

that was odd, as all the info I could find on it said that doctors usually

recommend lifetime maintenance on oral steroids, now. Now

she is having trouble in her leg, which her doctor is blowing off as " being old "

- but it really sounds like something this doctor should

be taking seriously - her leg was hurting and numb sort of at the same time, if

I remember right, for over a month, and she had fallen

once because of it (I think from sudden pain in the morning when she got up).

It does not sound like anything I've ever heard happens

from " just getting old " . You don't lose feeling in one leg, aside from an

intense buzzing pain, just from getting old - I don't think,

anyway. And anyway, she is only about 60 years old.

My MIL had severe headaches, as her only first symptom of the vasculitis. Has

Asenath had headaches too? I have mostly written it

off as a possibility for Jericho, because he has never had a severe headache,

that I know of. He has had severe pain in his eye and in

his leg, though. The eye had an abnormal evoked potential test.

Someone on here mentioned how mito usually affects at least 3 organ systems,

which matches info I have found this week, on mito. I

have been thinking that Jericho must not have mito then, since all his symptoms

are neurological. But I've also been trying to look at

his case from all angles to be sure his symptoms are really all neurological,

and not some other things as well - maybe muscles or

something.

I did read on one website that mito sometimes presents as atypical multiple

sclerosis, so I've been wanting to find out more about

that. He seems to match really well for classic relapsing-remitting MS, though.

Jericho is going to be seeing Dr. Swoboda at Primary Children's next month, to

formally rule out any mito or metabolic disorders,

episodic ataxia, and alternating hemiplegia. I'm quite sure he does not have

the latter two, and Dr. Swoboda, in talking to Jericho's

current ped neuro, has said she doesn't think his case sounds like alternating

hemiplegia either. I have heard great things about her

and I look forward to hearing her opinion on Jericho's case. Maybe she will

know of something I haven't heard of yet, such as some

metabolic disorder and it will have a treatment to stop it completely. Okay,

not likely, but it's worth a shot. ;-)

I'm mostly just trying to get a feel for mito stuff in general, before we see

Dr. Swoboda - so there aren't any complete surprises. MIto

was the only thing suggested recently, that she treats, that seems like

something Jericho could possibly have (as far as I know).

Last year, when Jericho was denied some care in the hospital because " this kind

of thing never comes and goes with kids, therefore

nothing is actually the matter " , I vowed to do everything I could to have a

diagnosis before his 5th birthday. Right now it is looking like

that may become a reality. He turns 5 at the end of March. I just hope he has

something we can do something about. But even if he

has something that it wholly untreatable, I still want to know what it is we are

dealing with.

Lynne

[Guest guest]

> First, have you been on the Mito list for long? If not welcome to our

group..

Thanks! I have popped in to the mito list to check mail every now and then, for

awhile - maybe once every few months I would skim

the subject lines on the homepage with the first 5 posts, but that was about it.

But haven't really kept up on this list or posted much

at all - just once in the beginning. I read the list carefully for a week or

two in the beginning, and caught a little of what was going on

with Asenath, either then or soon after, but I didn't know everything you

mentioned. I did get the impression that you had found what

was the matter, and things were getting done about it. That was the inspiring

part. You don't seem SO lost like I still do! :-)

When you last posted on the hk list, which indeed was quite awhile ago - and was

about Asenath having mito and not cp - I had been

thinking for a bit that Jericho's case sounded more like Asenath's, and not like

everyone else on that list. He seemed to develop new

problems that others did not, and he seemed to recover from them after only

weeks or months, where others did not. However, his

symptoms generally take longer to change than I remember Asenath's doing, on the

hk list.

I joined the mito list back then, when you posted about the mito to the hk list,

to get a feel for whether Jericho might have mito, too.

But after asking some questions and reading a little, I didn't feel like he did.

I still feel like it is an unlikely diagnosis for him, but since

it came up on a recent report (possibility of MELAS), I wanted to check into it

more carefully again.

It is really looking like Jericho probably has multiple sclerosis. The

neurologist who specializes in that is supposed to call me soon,

and the wait is killing me. :-) Jericho has been having swallowing trouble for

over 2 months now. The neuro-opthamologist felt he

most likely has MS, and said if he gets diagnosed soon, he could get IV steroids

to try to end this episode sooner. So I have been

hoping for that. I don't want him in the hospital for Christmas, but I would

love to know before Christmas, whether he has the MS or

not. Well, especially if he does have it. But mostly I'm just hoping to have a

way to end this episode as soon as possible.

There was talk last month of a g-tube for Jericho, and his OT still thinks it

may help, since he hasn't been getting enough fluids. She

thinks that he is in something of a vicious circle, with neurological problems

(dysphagia) leading to mild, chronic dehydration, which in

turn keeps the neurological stuff happening. I'm really hoping we can avoid a

g-tube for a long time to come. It does look like he will

need one eventually, but I'd rather put it off as long as possible.

You mentioned vasculitis, and that is something the neuro said he might look

into for Jericho. My MIL had vasculitis, which did not

show up on her MRI, but was found via a brain biopsy. For her, the steroid

treatment was oral steroids for only one month. I thought

that was odd, as all the info I could find on it said that doctors usually

recommend lifetime maintenance on oral steroids, now. Now

she is having trouble in her leg, which her doctor is blowing off as " being old "

- but it really sounds like something this doctor should

be taking seriously - her leg was hurting and numb sort of at the same time, if

I remember right, for over a month, and she had fallen

once because of it (I think from sudden pain in the morning when she got up).

It does not sound like anything I've ever heard happens

from " just getting old " . You don't lose feeling in one leg, aside from an

intense buzzing pain, just from getting old - I don't think,

anyway. And anyway, she is only about 60 years old.

My MIL had severe headaches, as her only first symptom of the vasculitis. Has

Asenath had headaches too? I have mostly written it

off as a possibility for Jericho, because he has never had a severe headache,

that I know of. He has had severe pain in his eye and in

his leg, though. The eye had an abnormal evoked potential test.

Someone on here mentioned how mito usually affects at least 3 organ systems,

which matches info I have found this week, on mito. I

have been thinking that Jericho must not have mito then, since all his symptoms

are neurological. But I've also been trying to look at

his case from all angles to be sure his symptoms are really all neurological,

and not some other things as well - maybe muscles or

something.

I did read on one website that mito sometimes presents as atypical multiple

sclerosis, so I've been wanting to find out more about

that. He seems to match really well for classic relapsing-remitting MS, though.

Jericho is going to be seeing Dr. Swoboda at Primary Children's next month, to

formally rule out any mito or metabolic disorders,

episodic ataxia, and alternating hemiplegia. I'm quite sure he does not have

the latter two, and Dr. Swoboda, in talking to Jericho's

current ped neuro, has said she doesn't think his case sounds like alternating

hemiplegia either. I have heard great things about her

and I look forward to hearing her opinion on Jericho's case. Maybe she will

know of something I haven't heard of yet, such as some

metabolic disorder and it will have a treatment to stop it completely. Okay,

not likely, but it's worth a shot. ;-)

I'm mostly just trying to get a feel for mito stuff in general, before we see

Dr. Swoboda - so there aren't any complete surprises. MIto

was the only thing suggested recently, that she treats, that seems like

something Jericho could possibly have (as far as I know).

Last year, when Jericho was denied some care in the hospital because " this kind

of thing never comes and goes with kids, therefore

nothing is actually the matter " , I vowed to do everything I could to have a

diagnosis before his 5th birthday. Right now it is looking like

that may become a reality. He turns 5 at the end of March. I just hope he has

something we can do something about. But even if he

has something that it wholly untreatable, I still want to know what it is we are

dealing with.

Lynne