MSA-age when disgnosed-1st onset of symptoms

[Guest guest]

My sister started having symptoms in 1999, at the age of 51. When

she was 52, she was diagnosed with Orthostatic Hypotension, and was

told to increase the amount of salt in her diet. At the age of 53,

she had to stop working, because she was fainting so much, and she

had also developed cardiac arythmia. During the same year, she was

diagnosed with MSA by Dr. Low, at the Mayo Clinic, after 3 days of

tests.

My sister is now 54, and Dr. Low has ordered her into her local

hospice program. She has little will left to fight her symptoms,

which include (among other things) pain, inability to walk more than

a few feet at a time, frequent infections, difficulty speaking and

swallowing, alternating diarrhea or constipation. I think that the

pain is the hardest part for her right now, although I don't read

much mention of pain as a symptom of the MSA patients here on the

support site, so I am not sure why she is feeling it. The doctors

mention the possibility of " neuropathy, " in regards to the pain.

My sister lives in a remote area of New Mexico, and it is difficult

or impossible for her to travel, due to her inability to remain

upright for any substantial amount of time. She has an appointment

with Dr. Low in June, but heaven knows if she will be able to travel

at that time, because she is already so weak. We have learned that

even after being at her worst, she may be able to rebound somewhat,

at least for awhile.

At this time, we are praying for comfort and peace, for my sister,

and if this means that she will not be with us much longer, then so

be it. We don't want her to continue to live with the pain as she

feels it now. She does not want to burden any of us, as she is less

and less able to care for herself.

As far as the value of this support site, I have much appreciated

reading the posts of all of the wonderful people here at the support

group. My sister came on here once, and then never returned. She

probably found it depressing, as she is easily depressed at the

thought of her condition, and it is difficult for her to sit at her

computer now. I find this support to be good, however, and I have

been happy to meet many wonderful people through this site. I feel

mountains of love, and faith in the goodness of God's people, here,

amongst all of you. You are people who know how to turn the burden

of catastrophic and disabling conditions, into a blessing.

As J. Fox says of his own experience with PD, he finally

knows what a blessing his life is - how fortunate he has been, that

through his diagnosis, he has become more grounded and he appreciates

all that he has in his life, that many people never have in their

entire lifetimes. He has many good fortunes, including having had

the time to sort through all of his feelings - and he has had his ups

and downs through it all.

For whatever reasons, some of us have conditions that we cannot

control, and some of us need more help just to be able to do normal

daily functions. The more independent our personalities are, the

more difficult it can be for us to rely on others to care for us.

It's not always easy for the needy one to accept dependence on others.

The physically needy may not understand what gifts they are to the

more able-bodied. Caregiving is God's work, and the caregiver has a

place with God's angels, for the remainder of eternity. Just being

able to lighten someone else's burden, is a gift. I can see that

many of you, here in this group, realize how blessed you are, by your

experiences, and by your ability to see good when others are still in

the dark.

As for the cause of my sister's condition - everything started

happening to her, after the fires at the Los Alamos nuclear reactor

plant. When the fires were burning, she, and everyone else in her

area, breathed in the ash from the fires, as it was in the air,

everywhere. There was no way to escape it. No one is saying for

sure, but it is speculated that environmental factors may be a

contributing factor in the development of MSA.

Oh boy... I just wanted to answer a few simple questions, and here I

am, rambling on...... Sorry for the epistle. For me, writing is

good therapy. I hope that this helps in determining ages of onset of

symptoms, and diagnosis of MSA patients. Peace to everyone

here....... - (pistachio53)