An MS story about a friend of mine, and a member or former member of our group

[Guest guest]

I have a friend whom I first met online on a large cystic

fibrosis yahoo group. (I also have cystic fibrosis.). No

one has heard from her in a very long time. I have been

moderating the smaller cystic fibrosis group that she had

set up, primarily for parents, adoptive parents, foster parents

and relatives of children who have cystic fibrosis.

This friend went for years with chronic, uncontrolled seizures

and the use of a seizure-alert dog, before finally being diag

nosed with end-stage rapidly progressive (at that point) MS.

She is unable to respond to posts; I post to her husband who

reads them to her. I also transfer the group posts to him and

I do hope that she is able to have them read to her. Recently,

although posts to the e-mail address do not bounce, there

are no responses from her husband.

The last I knew she was confined to bed, could not tolerate a

room temperature over 55 degrees, and was losing bowel

and bladder control, and was losing her eyesight. That is

the last that I have heard.

Now, to the point of this sadness. What I am horrified by,

is why no neurologist ever had an MRI, and MRA, a spinal

tap, nothing done to rule MS in or out, given that they never

found on hundreds of EEGs, why she was having seizures,

and they knew that she was not faking them.

This couple, my friend and her husband, have three of their

own children who have cystic fibrosis, have adopted two

more, and one more with Type I diabetes. No wonder they

seldom have time to answer e-mails! This was all done after

she had had eight seizures in relatively early life and they had

not yet resumed. Everything just broke loose during the past

year and one-half and she was re-diagnosed, even joined this

group, and posted to Sharon.

For all I know, things would be very bad even if she had been

diagnosed earlier (though the seizures might have been con

trolled earlier), treated for MS, etc. But I rather doubt it. By

the time she was diagnosed with MS, hers was far worse than

MS is for most of us in this group--even if we do last until my

own age (71).

So, as ther may or might be a possible genetic connection,

I urge each of us to have all relatives and friends who have

anything that MIGHT be MS, ruled IN or OUT, and soon.

I know: More Cheer from n. . . again!Love to each of you and to those close to you,

n

[Guest guest]

My dear n, This breaks my heart... It is hard to know what to say.I hope that if/when you hear from her husband, she willstill be here 'with you/us'... Part of how I discovered I had MS besides being dx'd withtrigeminal neuralgia, was my sister (finally) sharing after herknowing for 5 yrs! that she has RRMS--so they ran tests on me,and then it was foundThank you for this share, n, as tragic as it is...we are herefor you...love to you my friend, Kate An MS story about a friend of mine, and a member or former member of our groupTo: MSersLife > I have a friend whom I first met online on a large cystic> fibrosis yahoo group. (I also have cystic fibrosis.). No> one has heard from her in a very long time. I have been> moderating the smaller cystic fibrosis group that she had> set up, primarily for parents, adoptive parents, foster parents> and relatives of children who have cystic fibrosis.> This friend went for years with chronic, uncontrolled seizures> and the use of a seizure-alert dog, before finally being diag> nosed with end-stage rapidly progressive (at that point) MS.> She is unable to respond to posts; I post to her husband who> reads them to her. I also transfer the group posts to him and> I do hope that she is able to have them read to her. Recently,> although posts to the e-mail address do not bounce, there > are no responses from her husband.> > The last I knew she was confined to bed, could not tolerate a> room temperature over 55 degrees, and was losing bowel> and bladder control, and was losing her eyesight. That is > the last that I have heard.> > Now, to the point of this sadness. What I am horrified by,> is why no neurologist ever had an MRI, and MRA, a spinal> tap, nothing done to rule MS in or out, given that they never> found on hundreds of EEGs, why she was having seizures,> and they knew that she was not faking them.> > This couple, my friend and her husband, have three of their> own children who have cystic fibrosis, have adopted two > more, and one more with Type I diabetes. No wonder they> seldom have time to answer e-mails! This was all done after> she had had eight seizures in relatively early life and they had> not yet resumed. Everything just broke loose during the past> year and one-half and she was re-diagnosed, even joined this> group, and posted to Sharon.> > For all I know, things would be very bad even if she had been> diagnosed earlier (though the seizures might have been con> trolled earlier), treated for MS, etc. But I rather doubt it. By> the time she was diagnosed with MS, hers was far worse than> MS is for most of us in this group--even if we do last until my> own age (71).> > So, as ther may or might be a possible genetic connection,> I urge each of us to have all relatives and friends who have> anything that MIGHT be MS, ruled IN or OUT, and soon.> > I know: More Cheer from n. . . again!> Love to each of you and to those close to you, > n Please visit: http://www.bicycleman.comawesome guy, fantastic site. All types of bicyles, many recumbents; perfect for an MS Bike Tour!

Attachment: vcard [not shown]

[Guest guest]

Thank you Kate. I sent this along today, as I strongly

suspect that she has long since passed on. What just

always got to me--during all the years that I have known

her--and I met her at a CF conference, is that she did not

even mention the seizure thing because from her point

of view, they had rather magically disappeared, until she

started having grand mal seizures later in life. I think that

had she known, from early in life (say, for example, age

21), that she and her husband might have organized their

lives very differently. Not that the adopted children have

not benefitted greatly. They also have a child of their own

who seems to have some sort of sensory integration prob

lems, but who does not sound autistic to me. I cannot but

wonder whether this child, now an adolescent, does not also

have Multiple Sclerosis. All the kids are cf carriers, and this

one child with "sensory integration problems" definitely does

not have cystic fibrosis. The situation is unbelievably complex.

But the whole point to my even bringing it up, is to emphasize

how important it is for a competent neurologist to be able to

make an accurate differential diagnosis as soon as possible.

I am very fortunate. I had noticed that I was having some vision

problems when I was 19. So I went to our family's opthalmologist,

Harvey , M.D., in Portland. Dr. , peered intently

at me, having completed his examination and said, slowly and

gently:

"This is not a problem that glasses can correct, n. Would

you be willing to spend a few days up at the University of Oregon

Medical School (founded in part by my great-grandfather and

my grandfather) where their opthalmologists and neurologists

can see what might best be done?"

This led me to beihng admitted and to encountering a great

neuro-opthalmologist, , M.D. and eventually to my

hilarious visit with Roy, Swank, M.D., then head of the department

of neurology at the U of O medical school.

But I was fortunate to find out early in my life. They were, in my

situation, able to establish that my own epilepsy was due to my

having been born with hydrocephalus (which resolved), and not

to the newly diagnosed Multiple Sclerosis.

If only my friend had had the quality of medical care that she

made certain that every one of their children got!Thank you, Kate, and love to each of you,

n

[Guest guest]

I don't suppose you have her phone number or an address (snail mail) or you would have called/written. I pray your friend is alive and doing better, and if she has passed, that her passing was as easy and painless as possible. I do hope you hear from them soon! Hugs, dear friend... Akiba -- An MS story about a friend of mine, and a member or former member of our group I have a friend whom I first met online on a large cystic fibrosis yahoo group. (I also have cystic fibrosis.). No one has heard from her in a very long time. I have been moderating the smaller cystic fibrosis group that she had set up, primarily for parents, adoptive parents, foster parents and relatives of children who have cystic fibrosis. This friend went for years with chronic, uncontrolled seizures and the use of a seizure-alert dog, before finally being diag nosed with end-stage rapidly progressive (at that point) MS. She is unable to respond to posts; I post to her husband who reads them to her. I also transfer the group posts to him and I do hope that she is able to have them read to her. Recently, although posts to the e-mail address do not bounce, there are no responses from her husband. The last I knew she was confined to bed, could not tolerate a room temperature over 55 degrees, and was losing bowel and bladder control, and was losing her eyesight. That is the last that I have heard. Now, to the point of this sadness. What I am horrified by, is why no neurologist ever had an MRI, and MRA, a spinal tap, nothing done to rule MS in or out, given that they never found on hundreds of EEGs, why she was having seizures, and they knew that she was not faking them. This couple, my friend and her husband, have three of their own children who have cystic fibrosis, have adopted two more, and one more with Type I diabetes. No wonder they seldom have time to answer e-mails! This was all done after she had had eight seizures in relatively early life and they had not yet resumed. Everything just broke loose during the past year and one-half and she was re-diagnosed, even joined this group, and posted to Sharon. For all I know, things would be very bad even if she had been diagnosed earlier (though the seizures might have been con trolled earlier), treated for MS, etc. But I rather doubt it. By the time she was diagnosed with MS, hers was far worse than MS is for most of us in this group--even if we do last until my own age (71). So, as ther may or might be a possible genetic connection, I urge each of us to have all relatives and friends who have anything that MIGHT be MS, ruled IN or OUT, and soon. I know: More Cheer from n. . . again!Love to each of you and to those close to you, n

[Guest guest]

Fifteen of us have mailed to her on the only e-mail

address that we have, and gotten no response--over

a period of about two months. I have her phone number

and I hear, as always, her husband's voice and the usual

request to leave a message. About ten of us have done

that and none of us has received a response, and of course

if she is going down hill rapidly, and/or has passed, we do

understand that. I myself am not willing to go further in attempting

to find what, after all, would only be resolution for me, i. e. sending

a letter via "snail mail," though I think one member of the group,

which I am moderating may do that.Sometimes, in the face of tragedy--and a pack of kids--the

father and husband may just be overwhelmed.

Heaven only nows that he has that right.

Thank you, Akiba. The real point to my post was not my

own inability to have "resolution" to it all, but to emphasize

the importance for one's self, one's children and spouse,

to obtaining an accurate diagnosis as soon as possible.

I myself had become concerned some years ago when I

realized that the medication my friend was being given,

a long with a service dog, was one also used in MS.

She was not even assessed for MS until she was totally

invalided, which shocks me about anyone.

Love to you, Akiba, and to all in our group,

n

To: MSersLife Sent: Saturday, November 8, 2008 11:46:57 AMSubject: Re: An MS story about a friend of mine, and a member or former member of our group

I don't suppose you have her phone number or an address (snail mail) or you would have called/written. I pray your friend is alive and doing better, and if she has passed, that her passing was as easy and painless as possible. I do hope you hear from them soon!

Hugs, dear friend...

Akiba

-- An MS story about a friend of mine, and a member or former member of our group

I have a friend whom I first met online on a large cystic

fibrosis yahoo group. (I also have cystic fibrosis.). No

one has heard from her in a very long time. I have been

moderating the smaller cystic fibrosis group that she had

set up, primarily for parents, adoptive parents, foster parents

and relatives of children who have cystic fibrosis.

This friend went for years with chronic, uncontrolled seizures

and the use of a seizure-alert dog, before finally being diag

nosed with end-stage rapidly progressive (at that point) MS.

She is unable to respond to posts; I post to her husband who

reads them to her. I also transfer the group posts to him and

I do hope that she is able to have them read to her. Recently,

although posts to the e-mail address do not bounce, there

are no responses from her husband.

The last I knew she was confined to bed, could not tolerate a

room temperature over 55 degrees, and was losing bowel

and bladder control, and was losing her eyesight. That is

the last that I have heard.

Now, to the point of this sadness. What I am horrified by,

is why no neurologist ever had an MRI, and MRA, a spinal

tap, nothing done to rule MS in or out, given that they never

found on hundreds of EEGs, why she was having seizures,

and they knew that she was not faking them.

This couple, my friend and her husband, have three of their

own children who have cystic fibrosis, have adopted two

more, and one more with Type I diabetes. No wonder they

seldom have time to answer e-mails! This was all done after

she had had eight seizures in relatively early life and they had

not yet resumed. Everything just broke loose during the past

year and one-half and she was re-diagnosed, even joined this

group, and posted to Sharon.

For all I know, things would be very bad even if she had been

diagnosed earlier (though the seizures might have been con

trolled earlier), treated for MS, etc. But I rather doubt it. By

the time she was diagnosed with MS, hers was far worse than

MS is for most of us in this group--even if we do last until my

own age (71).

So, as ther may or might be a possible genetic connection,

I urge each of us to have all relatives and friends who have

anything that MIGHT be MS, ruled IN or OUT, and soon.

I know: More Cheer from n. . . again!Love to each of you and to those close to you,

n