re:Pete's eyes

[Guest guest]

Dear Cath- I appreciate any advice you can give us. Pete gets blurred vision

mostly in his right eye which is the same side he had his " blown-up " ear and

has arterial vasculitis on that side of his temple. Lately(past 6 months) the

blurring becomes so bad that he can hardly see shadows..and by the next day

it is fine. One Opthamologist said he had the slight start of macular

degeneration , another said there was none. Both agreed he has the start of

cataracts(but surgery not indicated at this time because it is so slight) and

has a very small old scar on his right eye. Today his left eye was

affected..his doc gave him an extra 10 of prednisone and it is clearing up.

His flares are usually associated with a drop in the barometer(90% of the

time) Coincidence?? who knows..I have started a chart...he does have diabetes

secondary to the long term prednisone use but his sugars have all been in the

normal range when blurred vision occurs. The doctor at Columbia was very

attentive but obviously admitted he had never heard of RP. He said he would

gladly see Pete when his vision was blurred but on Friday afternoon of course

he was gone for the weekend. Again thanks so much for your quick response

Janet

[Guest guest]

Janet, I find this v. interesting - I get this

blurring sometimes, have assumed it was diabetes

related even though I have fairly good control. With

me it seems to happen when I am tired. I will check

it outnext time I see the eye man, which I do every

year. Hope Pete gets it under control. Love Liz

--- Baaboo19@... wrote:

> Dear Cath- I appreciate any advice you can give us.

> Pete gets blurred vision

> mostly in his right eye which is the same side he

> had his " blown-up " ear and

> has arterial vasculitis on that side of his temple.

> Lately(past 6 months) the

> blurring becomes so bad that he can hardly see

> shadows..and by the next day

> it is fine. One Opthamologist said he had the slight

> start of macular

> degeneration , another said there was none. Both

> agreed he has the start of

> cataracts(but surgery not indicated at this time

> because it is so slight) and

> has a very small old scar on his right eye. Today

> his left eye was

> affected..his doc gave him an extra 10 of prednisone

> and it is clearing up.

> His flares are usually associated with a drop in the

> barometer(90% of the

> time) Coincidence?? who knows..I have started a

> chart...he does have diabetes

> secondary to the long term prednisone use but his

> sugars have all been in the

> normal range when blurred vision occurs. The doctor

> at Columbia was very

> attentive but obviously admitted he had never heard

> of RP. He said he would

> gladly see Pete when his vision was blurred but on

> Friday afternoon of course

> he was gone for the weekend. Again thanks so much

> for your quick response

> Janet

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Janet:

So sorry to take this long to respond will explain further later in this

e-mail.

It sounds like to me that Pete is having some type of temporal arteritis

or inflammation of blood vessels that lead to his eyes. When inflammed,

they swell and decrease blood flow

ie: decreased vision etc. I do remember he also has headaches. Make

sure you watch it real close because docs can't see that by looking into

eyes some of the time. He could also be having some type of optic

neuritis posterior to the optic nerve which means his eye could appear

normal to the ophthalmologist, but problems are further back in his

brain.

Seems like inflammation of some type is causing problem since pred will

decrease symptoms. I would have him take as much as it takes to turn

the vision loss around when it occursas fast as possible.. I know how

quickly he lost his hearing and worry that if not careful something

could do that to his eyes too if he doesn't act quick. I'll pray real

hard for God to heal his eyes.

The reason I've not responded until now is that I have taken a bad turn

for the worse. This job is really killing me with the stress and could

use lots of prayers. My Sed Rate is now slightly elevated and has never

been over 4 before now, my c-reactive is also high and are my white

blood cell count.

I could use a few prayers since an episode friday night around 1:30 when

I collapsed and lost all feeling in my lower body. I had to pull myself

to the front door by my elbows and struggle to unlock it in case the

paramedics were needed. I really thought I had a stroke. I chewed (3)

800mg Ibuprofen tablets (yuck!!!!) and took 40mg of prednisone and

within 45 minutes I started to feel my legs again. I stayed up most the

night praying and was afraid to go to sleep since I didn't think I would

wake up. Still don't know what is happening since my legs and feet

still feel like they are asleep at times. Last night my right arm went

numb also.

I have appointment on thurs with doc but he won't have a clue so will

rely on God to help me figure this out. As usual, I think pred is the

answer and an MRI. Am hoping that disc in back is causing problem, not

blood clots or MS. It was just so wierd to lose all feeling in my lower

half of the body. It was just like I felt after an epidural with my

c-section with Caitlin. I am so scared of what would happen if

something happens to me.

Mom is flying in on sunday since I'm freaking out and don't know what

may have to be done. Am scared docs don't know what to do and that they

will make it worse. They have been little help in the past. I'm so

worried I won't be able to see Caitlin grow up.

Janet, let me know how Pete is doing ok. God will get us through this

as he has in the past. Have major decisions to make on my part since

the stress is truly killing me. I know he hasn't brought me this far to

just let me fall apart.

Sorry to be so long and yes it's Cathy finally posting. I do try

to read posts, but am so tired with working such long hours, most the

time I fall asleep when I put Caitlin to bed around 8:00 then I have so

many e-mails I feel so overwhelmed. I am trying to be better, but the

latest turn of events has me facing reality real quick.

Hope all is well with everyone else and and Lu I think of your

girls and am praying for them also. It's always so nice to the familiar

names on posts, and am glad to see we have many new friends, but sad

that this horrid disease is hurting others.

Prayers my friends are coming your way as well as a big hug to all. You

are all such special people.

Love,

Cath

Baaboo19@... wrote:

> Dear Cath- I appreciate any advice you can give us. Pete gets blurred

> vision

> mostly in his right eye which is the same side he had his " blown-up "

> ear and

> has arterial vasculitis on that side of his temple. Lately(past 6

> months) the

> blurring becomes so bad that he can hardly see shadows..and by the

> next day

> it is fine. One Opthamologist said he had the slight start of macular

> degeneration , another said there was none. Both agreed he has the

> start of

> cataracts(but surgery not indicated at this time because it is so

> slight) and

> has a very small old scar on his right eye. Today his left eye was

> affected..his doc gave him an extra 10 of prednisone and it is

> clearing up.

> His flares are usually associated with a drop in the barometer(90% of

> the

> time) Coincidence?? who knows..I have started a chart...he does have

> diabetes

> secondary to the long term prednisone use but his sugars have all been

> in the

> normal range when blurred vision occurs. The doctor at Columbia was

> very

> attentive but obviously admitted he had never heard of RP. He said he

> would

> gladly see Pete when his vision was blurred but on Friday afternoon of

> course

> he was gone for the weekend. Again thanks so much for your quick

> response

> Janet

>

>

>

[Guest guest]

>

CATH, I AM SO SORRY TO HEAR ABOUT YOUR EPISODE. THIS DARN YAHOO. I

ONLY GET A FEW POSTS AND IF I DONT GO READ THEM FROM THE SITE I NEVER

KNOW ABOUT IT. YOURS WAS ONE I DIDN'T GET.

I KNOW HOW MUCH YOU HAVE BEEN THROUTH CATH AND YOU ARE RIGHT, GOD

DIDN'T BRING YOU THIS FAR TO LET YOU DOWN. I HAVE LOST FEELING IN MY

FEET AND IN MY ARMS UP TO MY ELBOWS. NO ONE KNOWS WHY....THEY HAVE

RULED OUT DISC, MS, NEUROPATHY AND A BUNCH OF OTHER STUFF. I KNOW

THEY WILL FIND OUT WHAT IS WRONG AND IS WILL BE FIXABLE. SOUNDS LIKE

THE STRESS IS BUILDING UP EACH DAY. PLEASE KNOW THAT YOU AND

CAITLIN ARE IN MY PRAYERS.

I'M SO GLAD THAT YOUR MOM IS COMING, WILL TAKE ALOT OF WORRY FROM

YOU. (MOTHERS DO THAT YOU KNOW)LOL TELL YOUR MOM HI FOR ME AND GIVE

BOTH HER AND CAITLIN A HUG FOR ME.

TAKE CARE OF YOURSELF CATH. YOU'VE GOT ME WORRIED. GLAD THAT YOU

POSTED. KNOW HOW HARD IT IS FOR YOU.....TOO MUCH WORK AND NO

PLAY.LOL

BE SURE TO LET US KNOW WHAT YOU FIND OUT AT THE DR.

SENDING LOTS OF PRAYERS

CLAUDIA C