The REAL issue affecting those in limbo

[LIW]

The following is not meant to unnecessarily worry any limbolander but it is a poignant reminder of how important early diagnosis is for all in neurological/autoimmune limbo. Neurologists and the medical community often seem to forget what is happening to their patients as they allow them to languish in limbo.

Lucy, John Lennon's inspiration for 'the girl with kaleidoscope eyes', spoke with the paper about her journey to diagnosis of the autoimmune condition Lupus. Her condition had taken so long to diagnose that subsequent progression had made the condition harder for doctors to treat. She died last week.

Read the entire article today at daily mail uk.

[SickMomma_PDX]

My rheumy keeps insisting that having a label isn't important -- as long as he's treating my symptoms just like he would if he gave me the lupus Dx he says other (lesser! ;-) docs would have. I'm not convinced. And I definitely would prefer to have a label, if only so that I could tell people what's wrong with me.

(Of course, if I do get a lupus Dx, I've already heard from way too many people how they know someone with lupus and it's no big deal ... yeah, right!)

Thanks for sharing the link!

[MrsAristotle]

Hi there sorry the link about Lucy upset you. I am being tested for Lupus. I actually had a positive ANA at the beginning of my journey but then the one taken 6 weeks later was negative so I am still non the wiser.

My father had Lupus for many years so that is why I believe I could have it.

This journey is scary, but we are all here to support each other. If you ever need support or just an Internet hug someone will always be here for you.

Like LIW said please let us know how you get on. Big hugs Mariaxx

[LIW]

Hello

Welcome.

I am really sorry that this depressed and scared you, as I said this ws not my intention.

I think Lucy was incredibly selfless and brave to speak out about the dangers of delaying diagnosis especially in the face of mounting physical evidence that something is wrong.

Limbo is scary and depressing and that is why we are all here, to support each other :)

Take one day at a time and do let us know how you get on.

Sending support.

L

[LillyLiverGirl]

I heard the story on NPR last week just after having had my labs drawn for Lupus. Made me depressed and scared.

[MrsAristotle]

Thank you for bring this up. I did read the article.

The link for it is here:

http://www.dailymail.co.uk/health/chat/article-1217848/Lucy-girl- kaleidoscope-eyes-inspired-Beatles--final-tragic-battle.html

I am now being referred to the reumatologist as I have had one positive ANA for Lupus and some of the same symptoms that Lucy had. I also had 5 miscarriages from 1969 until my hysterectomy in 1976.

It was a sad read.