Lupus Support - Another "newbie"

Author

Another "newbie"

Zuska

2006-07-19, 2:24 am

Hi all ~

I am also new to the group, and although I subscribed a few days ago,
today was the first time I recieved an email. (I have it set to digest
so as to not overload my in box.) Anyway, here is my story:

For several years, I was getting eye infections, which were diagnosed
as ulcerated corneas. I was told that I had 'dirty eyelids' that caused
this. The eye doctor would give me some eye drops, and the infection
would clear, only to be back in a few months. Over time, these
occurances came closer and closer together, until on 1/23/04 it
happened again, and this time would not go away. When I was on the eye
drops, it would clear up, but as soon as I stopped using them, within
24 hours, I was in great pain and could not see. Even with the eye
drops, I had to wear sunglasses inside, and my boss told me later that
she just thought I must cry alot before coming to work.

After three months of this, I told the eye doctor that I did not have
faith in his treatment, since everytime it would come back, he told me
to use the same medicines. He asked if I wanted to talk with another
doctor in the practice who specialized in infectious diseases of the
eye ~ my mind said, "You dummy" and my mouth said, "I would love to!"

She came into the room, and after one look, promptly annouced that I
had an "Autoimmune Systemic Scleritis." I figured that I could remember
that until I got home, so I agreed to continue with the same eye drops.
Checking this out on the computer showed that if she was correct, that
I had either MS, RA, or Lupus.

In July when my health benefits kicked in, I saw my PCP, told her what
was going on with my eyes, she referred me to a Rheumatologist, and
after seeing him, I received in the mail the results of blood tests,
with the handwritten note, "You have Lupus."

I was stunned ... both by the diagnosis, and his cavalier approach to
'breaking the news.'

I did not have what I would refer to as any symptoms until 9/05, when I
began to notice fatigue. When I saw him in December, he decided that
the fatigue was due to not sleeping well, and wanted a sleep apnea test
and prescribed Flonase and Zyrtec. I did not believe him, and never
bothered getting the prescriptions filled, although I did get the
humidifier that he also suggested.

In March 2006 I finally ended up at the Lupus Center for Excellence (I
had called for an appointment in November and March was the first
available) and that is when I found someone who really listened. After
lots of tests, I was started on Plaquanil, and she showed concern about
blood in my urine.

In late April - early May, (as I put it) I seem to have "forgotten" how
to walk. This happened rather suddenly, and was quite frightening. My
Rheumatologist decided to get very involved in finding out what was
going on, and within a week I was also seeing a Urologist (for the
blood in the urine) and a Neurologist (regarding weakness and
difficulty walking).

The long and (not so) short of all this, is that I am currently
diagnosed with Sjogren's Syndrome, Lupus, and some neurological mess
that as yet has no name. At first, they thought it was CIDP, but an EMG
with NCS ruled that out. I am currently waiting as patiently as I can
for the results of genetic testing to see if I have something called
Multifocal Motor Neuropathy. I use a walker in my home, and crutches
when out of the house. I am currently on medical leave from work, and
my job is only protected through Labor Day (Sept. 5) and the
Neurologist has said that I will not be able to go back to work, and
that he will not initiate treatment unless things get worse.

So, I will see the Neurologist on 7/27, then the Rheumatologist on 8/1,
at which time I guess we will decide what the game plan is. It has been
a VERY long month waiting for the genetic testing, but only one more
week to get through.

My therapist this week recommended "Radical Acceptance" ~ in other
words, as hard as it is to just hang on not knowing what is going on, I
need to remember what I can (and cannot) change.

So, I am very excited to be able to talk with others who have dealt
with this a lot longer than I have ~ and as I read, much more problems
than I, and am looking forward to any suggestions for questions to ask
the doctors, and hints on how to manage on a day to day basis.

Wishing all the best to everyone, and I look forward to sharing ~ good,
bad and ugly.

Susan aka Zuska

William R Thompson

2006-07-19, 8:27 am

"Zuska" wrote:

<snip>

Hi, and welcome to the group. You've found a great place for
advice and to vent frustrations.

How much advice have you received on how to avoid setting off
a lupus flare? Ultraviolet light is a big problem for a lot of us,
but sometimes the medical community doesn't give all the details
you need to cut down on UV exposure. Other things can cause
problems.

A couple of good sites for general lupus information are

http://www.northeastlupus.org.uk (thanks to Andy)

and

http://clik.to/lupus (thanks to Shelagh)

--Bill Thompson

Sherry

2006-07-19, 4:26 pm

Zuska (Susan),

Welcome to the group! Sorry you have to be here but here is the place to
be. This is a great place to learn, share, laugh, cry, whine, give and get
the support we all need from time to time.

Hugs,
Sherry

Shelagh

2006-07-19, 4:26 pm

Hello Zuska,
Welcome and just let me say first off that I, (and all the rest of us I =
am sure!), am very sorry that you are going through such trying times =
with your 'diagnoses'... something that you are going to have to try to =
remember perhaps is that these illnesses are not like this 'always'; in =
fact once all is decided by the 'pros' and docs in charge, and you are =
actually being treated for 'what ails you', you may end up with a =
remission-like period which will leave you feeling as if you have =
nothing wrong that you can't handle which will last for a good while all =
going well etc; of course they don't last either but they are nice while =
here and break up the 'very bad' to the 'not so bad' times greatly I =
find! anyway, something to hang onto when the going is rough like now =
for you!
Just thought I would put something cheery down first as I can 'hear' the =
frustration in your email and=20
FYI? ---> that is a good way to trigger your illnesses;=20
IE: stress, other viral/flue type bugs, sunshine, UV light, crowds, too =
much 'busyness' and even hormonal issues can all trigger all these =
illnesses so you have to walk as if on broken glass, very carefully and =
treat yourself with the greatest kindness no matter how you feel!
I wish you success with your upcoming DNA results and all and hope like =
heck someone 'initiates treatment' for you and soon as there are all =
kinds of great meds for these conditions that will keep the symptoms in =
abeyance as well as help you to feel human again! (as well as to regain =
your lifestyle!!)
Personally: I have systemic lupus, sjogrens and raynauds as well as a =
spinal condition that was because of genetics, and so have been through =
all the hoops including nephritis with lupus and being wheelchair bound =
at other times!
Good luck and please do update our group with a new post once you feel =
up to it! I know we are all sending well wishes your way!
We will do our best to support you and help you with any questions or =
comments you may have also!
My hugs for you,
from Shelagh
http://clik.to/lupus
(please sign our guest map at my lupus website)

"Zuska" <Snowey95@aol.com> wrote in message =
news:1153280942.107623.320200@i3g2000cwc.googlegroups.com...
> Hi all ~
>=20
> I am also new to the group, and although I subscribed a few days ago,
> today was the first time I recieved an email. (I have it set to digest
> so as to not overload my in box.) Anyway, here is my story:
>=20
> For several years, I was getting eye infections, which were diagnosed
> as ulcerated corneas. I was told that I had 'dirty eyelids' that =
caused
> this. The eye doctor would give me some eye drops, and the infection
> would clear, only to be back in a few months. Over time, these
> occurances came closer and closer together, until on 1/23/04 it
> happened again, and this time would not go away. When I was on the eye
> drops, it would clear up, but as soon as I stopped using them, within
> 24 hours, I was in great pain and could not see. Even with the eye
> drops, I had to wear sunglasses inside, and my boss told me later that
> she just thought I must cry alot before coming to work.
>=20
> After three months of this, I told the eye doctor that I did not have
> faith in his treatment, since everytime it would come back, he told me
> to use the same medicines. He asked if I wanted to talk with another
> doctor in the practice who specialized in infectious diseases of the
> eye ~ my mind said, "You dummy" and my mouth said, "I would love to!"
>=20
> She came into the room, and after one look, promptly annouced that I
> had an "Autoimmune Systemic Scleritis." I figured that I could =
remember
> that until I got home, so I agreed to continue with the same eye =
drops.
> Checking this out on the computer showed that if she was correct, that
> I had either MS, RA, or Lupus.
>=20
> In July when my health benefits kicked in, I saw my PCP, told her what
> was going on with my eyes, she referred me to a Rheumatologist, and
> after seeing him, I received in the mail the results of blood tests,
> with the handwritten note, "You have Lupus."
>=20
> I was stunned ... both by the diagnosis, and his cavalier approach to
> 'breaking the news.'
>=20
> I did not have what I would refer to as any symptoms until 9/05, when =
I
> began to notice fatigue. When I saw him in December, he decided that
> the fatigue was due to not sleeping well, and wanted a sleep apnea =
test
> and prescribed Flonase and Zyrtec. I did not believe him, and never
> bothered getting the prescriptions filled, although I did get the
> humidifier that he also suggested.
>=20
> In March 2006 I finally ended up at the Lupus Center for Excellence =
(I
> had called for an appointment in November and March was the first
> available) and that is when I found someone who really listened. After
> lots of tests, I was started on Plaquanil, and she showed concern =
about
> blood in my urine.
>=20
> In late April - early May, (as I put it) I seem to have "forgotten" =
how
> to walk. This happened rather suddenly, and was quite frightening. My
> Rheumatologist decided to get very involved in finding out what was
> going on, and within a week I was also seeing a Urologist (for the
> blood in the urine) and a Neurologist (regarding weakness and
> difficulty walking).
>=20
> The long and (not so) short of all this, is that I am currently
> diagnosed with Sjogren's Syndrome, Lupus, and some neurological mess
> that as yet has no name. At first, they thought it was CIDP, but an =
EMG
> with NCS ruled that out. I am currently waiting as patiently as I can
> for the results of genetic testing to see if I have something called
> Multifocal Motor Neuropathy. I use a walker in my home, and crutches
> when out of the house. I am currently on medical leave from work, and
> my job is only protected through Labor Day (Sept. 5) and the
> Neurologist has said that I will not be able to go back to work, and
> that he will not initiate treatment unless things get worse.
>=20
> So, I will see the Neurologist on 7/27, then the Rheumatologist on =
8/1,
> at which time I guess we will decide what the game plan is. It has =
been
> a VERY long month waiting for the genetic testing, but only one more
> week to get through.
>=20
> My therapist this week recommended "Radical Acceptance" ~ in other
> words, as hard as it is to just hang on not knowing what is going on, =
I
> need to remember what I can (and cannot) change.
>=20
> So, I am very excited to be able to talk with others who have dealt
> with this a lot longer than I have ~ and as I read, much more problems
> than I, and am looking forward to any suggestions for questions to ask
> the doctors, and hints on how to manage on a day to day basis.
>=20
> Wishing all the best to everyone, and I look forward to sharing ~ =
good,
> bad and ugly.
>=20
> Susan aka Zuska
>