Marilyn

[Guest guest]

Marilyn, yup I have you in the study. Just did not have that file up and running

today.

You can have RP without having outer ear involvement or sinus involvement.

The sample was probably trying to figure out what was wrong with her.

R.

I don't ever remember my mom having the flares on her ears or nose,

but then I lived away from MT for many years when she first got

sick.

[Guest guest]

Hi Marilyn:

Sorry it took so long to post, but have been having lots of problems.

Had a bout severe headaches and eyelid droop so severe that they ran an

stat MRI. Well it came back normal. I had to break down and start pred

again, but at least the headaches are tolerable. MRI of my spine came

back with herniated disc and buldge, but nothing bad enough to cause the

complete loss of feeling. I did read in one RP article there was one

other case of paraplegia noted. Thank goodness God graced me enough to

get to my purse and chew ibu and pred and feeling came back. I think

they called it spinal ischemia and of course pred is the answer for most

of our ischemia. I'm glad I could pull myself to my purse and chew it

although it tasted sooooooo bad. Doc said I was having some type of

neuropathy and vasculitis in my brain causing the headaches.

Don't be afraid to try the Minocin. I have had no problems with the GI

tract and the antibiotic and consider it one of my lifesavers. I have

so much pain without it I don't think I could go on. Please consider

trying it if your doc will ok it. It must be Mincin pellets name brand

and I am on 100mg twice a day.

I can certainly testify that stress will make RP much worse. I can see

such a decrease in my health since starting this new job. The stress is

horrible and immature people there are trying to cause me problems since

I stepped into a management situation. Last week I requested I resign

from management since certain people will not work with me (I'm not the

first to be subjected to this I have found out). Life is too short to

live like this and my health is suffering terribly.

I'm praying God will help me make it there another 6 months and then I

can get long term disability. It's only 60% of my income, but along

with other policy that lasts 5 years, at least I could still survive and

not lose everything I have worked so hard for. I'm praying daily that

God will grace me the 6 more months and then I will get out of there so

fast. I already have one doc who is willing to disable me since she has

seen such a dramatic decrease in my health since starting there.

I'm still trying to get to e-mails as best I can, but am struggling. I

too am fighting going on meth since I fortunately don't have the

respiratory damage, but am realizing this disease is nothing to tangle

with and that I am getting worse. I only pray that once I can relax

some, my health will come back

Hope this helps a little.

My best to everyone and prayers that everyone is doing better.

Take care,

Cath

godave@... wrote:

>

> >

> > > Dear Cath,

> > >

> > > That was a really great article you sent to the group about

> various

> > > eye problems. Interesting to me especially, since I've had

> trouble

> > > with mine lately. Today I am having a flare up of vasculitis on

> my

> > > feet, and the four days prior to this I was having tearing and

> itchy

> > > eyes. My eyes are fine now, but that could be because I raised

> the

> > > pred for the vasculitis. Walking is a little hard today. Most of

>

> > > the spots are on the bottom of my feet and around the ankle.

> > >

> > > Weather here is not the greatest. Cloudy and cool. Seems like

> one

> > > day I wear my sweats and the next day I'm in short sleeved shirts.

>

> > > Thinking seriously of putting the flannel sheets back on my bed if

>

> > > our summer is going to be like this.

> > >

> > > Have a good week and thanks again for the post. Marilyn

> > >

> > >

> > >

> > >

> > >

> > >