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3 Posts
Discussion Starter · #1 ·
Dear Newly diagnosed group,
I am so glad to find this group. I just got diagnosed this
summer and am still working my rheumatologist and neurologist
to get treatment started.
I am so excited as I am 60 years old and my neurologist thinks
that my lupus began when I was 12 years old after what they
then thought was encephalitis following the German Measles or
I have two brothers who have lupus and so does my Mother.
I come from a family of ten children. So I make the third sibling to
get diagnosed with it.
I am also a head injury survivor. I have epilepsy from that and I think
that is what made it hard for doctors to get their act together.
Last November 20th, 2007 I was wheeling down the street where
I live in my wheelchair to go to the small corner store. One of my neighors
was upset with her husband and had been drinking the night before.
She was going 45 miles an hour in a 15 mile per hour speed limit
and hit me from behind. I was thrown 15 feet from my wheelchair.
After that my seizures went way out of control. I have grand mal seizures.
And my pain level was a constant 10 on a scale of 1-10 with 10 being the
worst. I had already been going to a pain clinic and the response I got
from the doctor was that my pain shouldn't have gotten worse.
Since I am a survivor of domestic violence, their assumption was
that my increased pain, etc. was all from psychological trauma and
they had me see this therapist. She didn't know anything about seizures.
I had one in front of her and got all bruised up because she didn't
even try to keep from bumping into the book case I was sitting next to.
Anyway in May I had what was thought to be a severe allergic reaction.
The emergency room doctor gave me prednisone for the reaction for
a week. By the fourth day my butterfly rash on my face began disappearing
,my pain level went way down and I finally went a whole week without
a grandmal seizure. I then knew what was going on and made an appointment
to see my pain doctor. His response was that since I felt better I must
be an addict. I was furious. He just dismissed me again. Since I only had prednisone for a week the feel better didn't last long.
Two weeks later I stopped urinating and looked like I was 20 months
pregnant. I ended up in the emergency room again and got referred
to a rheumatologist. Dr. Crout is super great. He and my neurologist
may be the only doctors I ever talk to again!!!!
Anyway this is the point I am at now. Sorry my message is so long.
Have a blessed day:rotfl:
Marcille--Jo Ann is my first name

6,152 Posts
Hi Jo Ann :)

Welcome to the Forum. My goodness! What a journey you have been on! :worried: I am very glad that you have been diagnosed at last and I hope that your treatment sees better days ahead for you.

This is just about the best place in the world to get support, advice and information on all things related to Lupus. Its nothing short of disgraceful to hear how people like yourself have been 'treated' so badly by the medical profession over the years. Im glad you have been vindicated in your journey to get appropriate healthcare.

Are you on other medications now besides the prednisone? I sincerely hope so. Please let us know if we can help in any way and in the meantime have a good look around the site.

Looking forward to getting to know you

Luv n stuff

150 Posts
Bit like me

Hi Jo-anne
pleased to meet you and ;)welcome. We have some things similar. Sorry that you did not get d/x until now, and that so many things have prevented doctors to find out earlier.

I too have only been diagnosed in my 60s, though have had symptoms all my life, particularly a head aneurism , seizure, and stroke :eek:where couldn't not talk.

Last 5 years have been hair-raising ,so many symptoms trying to make doctors listen, and test and observe. I am on Plaquenil since last Sep,:wink2: helping slightly, but have specialists looking at skin, kydney, connective tissue problems - which keep coming. But I've had to go away from my city, down south and north, as no specialists:sad:.

Sounds as though you have been through the mill too. I find our site so informative, and supportive, as we can all have our say, and our moderators have such good experience.:rolleyes:All the best with your good rheumy, I still have to find one like that. I look forward to your posts and progress.

Premium Member
11,410 Posts
Hi Jo Ann,

It is nice to meet you, welcome to the lupus site.:)

I have a brother with SLE like I do. (I am a female) That makes 2 out of 3 siblings in my family with lupus.

You have had quite a time with your lupus.:worried: I hope they soon get you on the right mix of meds. so you can get to feeling better soon.

Take care,

7,800 Posts
Hi Jo-ann and welcome :)

I'm sorry to hear that it has taken so long to get somewhere on your diagnosis but hope that now that you have you will get adequate treatment.

I have been luckier than you as my family history meant that I got diagnosed at 35 (after 8 or 9 years of searching). It took my Mum a lot longer to get any sort of diagnosis and she was very ill by the time they discovered what was wrong.

With all that I'm now fourth generation lupus (and/or similar) in my family. It seems to skip the men so far. Hopefully it will for my sons too.


3 Posts
Discussion Starter · #6 ·
To all those who sent me greetings--from Jo Ann Marcille
Thank you so much for all the welcomes. I know I am going to
continue feeling lots better.
I do not feel that great this morning though so I will post more
about my self later.
Have a great day
Marcille-Jo Ann:)
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