staciwillman
06-29-2005, 05:57 PM
Here is a forwarded e-mail from a person known to me personally, who could use your help: Thank you for taking a moment to read my story.
I'll try to keep it brief. It may help you or someone
you love as well!Just over four years ago, and within
four months, I was diagnosed with multiple
sclerosis,got worse very quickly,, and became
permanantly disabled at the age of 35 yrs. old. I was
diagnosed w/ fibromyalgia about 6 months later.
Still, I know I am blessed. I have friends,
family and a wonderful husband.Recently, however, I
it was found that I don't have MS at all, but that I
have a disease called CADASIL. It's genetic (bad DNA).
My doctors had never heard of it before, but a simple
blood test confirmed it and we believe I've probably
had the symptoms for about 17 yrs. now.Life
expectantcy is 10-23 yrs. after the onset of
symptoms. The disease causes strokes, and Alzheimer's
like symptom's among other problems. Here's the part
you should know,the part I would like to pass on from
one of my doctors...I asked him if he belived this
disease is that rare (200+ families in the US) or that
doctors just did not know to test for it? He told me
that anyone that has been diagnosed w/ MS and suffers
migraines should probably be tested. Some meds for MS
can actually be more harmful for this condition.
NOTE***MRI results for CADASIL and MS are nearly
identical. ( I do still have the fibromyalgia
diagnosis.)
Well, with my new diagnosis,come snew expensive
meds,and more out of state phys. visits to come, and
mounting bills.As my condition has worsened stairs,
some days cause tear jerking pain and other days they
are impossible as I loose the feeling in my legs. I've
looked for programs that could possibly help our
situation and found that it would have beeen easier if
I had never worked a day in my life...and like many
our income is too high to meet the requirements but
not enough to have any savings for the expense of such
an illness or the physical therapy that I've opted out
of because of the cost. I have not purchased e-mail
addy lists, or automated programs. I'm sending this to
the names on about 15 small lists I found on line
hoping to get the word out about CADASIL and, if at
all possible, get a small donation to help w/
expenses. Any thing $5,$10, $1, at all,would be
appreciated more than you know. More importantly,
please help pass this infomation along as I hate for
any more people to be treated with the wrong and
possibly medicines that can be of more harm by the
wrong diagnosis. Thank you so very much. Bless you.
JoMeyer
P.O.Box 71
Honeoye,NY 14471
*****I kn0w some may be leary of the P.O.Box...but I
just thought it foolish to put my home address on the
computer especially because my weakened state leaves
me vulnerable, but I did have to show photo I.D., and
proof of address to get the box.
I'll try to keep it brief. It may help you or someone
you love as well!Just over four years ago, and within
four months, I was diagnosed with multiple
sclerosis,got worse very quickly,, and became
permanantly disabled at the age of 35 yrs. old. I was
diagnosed w/ fibromyalgia about 6 months later.
Still, I know I am blessed. I have friends,
family and a wonderful husband.Recently, however, I
it was found that I don't have MS at all, but that I
have a disease called CADASIL. It's genetic (bad DNA).
My doctors had never heard of it before, but a simple
blood test confirmed it and we believe I've probably
had the symptoms for about 17 yrs. now.Life
expectantcy is 10-23 yrs. after the onset of
symptoms. The disease causes strokes, and Alzheimer's
like symptom's among other problems. Here's the part
you should know,the part I would like to pass on from
one of my doctors...I asked him if he belived this
disease is that rare (200+ families in the US) or that
doctors just did not know to test for it? He told me
that anyone that has been diagnosed w/ MS and suffers
migraines should probably be tested. Some meds for MS
can actually be more harmful for this condition.
NOTE***MRI results for CADASIL and MS are nearly
identical. ( I do still have the fibromyalgia
diagnosis.)
Well, with my new diagnosis,come snew expensive
meds,and more out of state phys. visits to come, and
mounting bills.As my condition has worsened stairs,
some days cause tear jerking pain and other days they
are impossible as I loose the feeling in my legs. I've
looked for programs that could possibly help our
situation and found that it would have beeen easier if
I had never worked a day in my life...and like many
our income is too high to meet the requirements but
not enough to have any savings for the expense of such
an illness or the physical therapy that I've opted out
of because of the cost. I have not purchased e-mail
addy lists, or automated programs. I'm sending this to
the names on about 15 small lists I found on line
hoping to get the word out about CADASIL and, if at
all possible, get a small donation to help w/
expenses. Any thing $5,$10, $1, at all,would be
appreciated more than you know. More importantly,
please help pass this infomation along as I hate for
any more people to be treated with the wrong and
possibly medicines that can be of more harm by the
wrong diagnosis. Thank you so very much. Bless you.
JoMeyer
P.O.Box 71
Honeoye,NY 14471
*****I kn0w some may be leary of the P.O.Box...but I
just thought it foolish to put my home address on the
computer especially because my weakened state leaves
me vulnerable, but I did have to show photo I.D., and
proof of address to get the box.