[angieD]

Hello everyone.
My dad passed away last June at the ge of 67, he had many ,many health problems.
My mom got a copy of his Gp records last week, I read through them & discovered he had a positive ANF of 1.100 speckled, in 1992 when his health took a nose dive.(he was medically retire at 54 yrs old)
His health problems included rashes that were treated as fungal but they never cleared up ( large ones on his chest & back) his thighs & arms,a butterfly rash now & again in his last couple of years that he said was caused by soap(he used the soap everyday but he only had a rash now & again) episodes of weight loss of upto 3 stones, exhaustion ,joint & muscle pains, tenosynovitis ,he was diagnosed with emphysema in 1992 through lung biopsy then they changed their minds 3 years later & said it was asthma, he had pulmonary hypertension ,B12 deficiency ,a massive PE heart failure, coeliac disease (biopsy) the coroner couldn't find evidence of this at post mortem, he had decreased kidney function eGFR 45, he had more problems too many to mention.
My question is, is the ANF the same as ANA, do you think he could have had lupus or something similar?
Could someone reply please
love
Angied

 

[LolaLola]

Dear Angie,

I think it is dreadful that you are having to try to piece an explanation together. You need support and it must have been dreadful to watch your Dad so poorly.
As far as I understand ANF is anti nuclear factor just like ANA. But if I am wrong I am sure others will answer. I just wanted to sympathise.

I have a friend with Lupus and many other things who did not realise for many years that her mother died of Lupus, she found it very upsetting.
Also your own health history sounds like a lot to cope with. How are you doing?
x Lola

 

[angieD]

hello Lola,
I've got to go for a Mri of my brain tomorrow to check for infarcts, small strokes or something because of recent symptoms.
Supposed to have gone thursday but forgot to confirm appointment so they've got me in for Tomorrow (I know it's Sunday )

How is your own health doing?

Thanks for your reply.
love
angied

 

[LolaLola]

Dear Angie, I hope the MRi goes well for you,and it is not too hot and sticky weatherwise.

Thanks for asking I am not too bad.On a hefty dose of steroids at the moment as I did fall apart rather, but after a week of greatly increased dose (and feeling fat) things are better and I am no longer taking painkillers by the handfull. Just the usual rotten job of decreasing them now.
Generally I get by. I am on Disability which is a great help. i get a bit lonely as the children are now 17 and 20, and my Husband is a bit of a Telly addict, otherwise I can't complain. Like you I have other conditions going on but generally am better than I was in the early days!I am also very sun sensitive so at least all the sheltering has given me young skin!

I managed to get a couple of shrubs put in the garden tonight so that was something.
My Son is just about to move out with his girlfriend so we have lots of furniture and things here stored for them which makes life a bit crowded!
X Lola

 

[Lily]

Hi Angie,

Lola is right in that the ANA is the same as ANF (anti-nuclear factor).
The reading was most likely 100 which is how the ANA direct method is stated.

Here are the reference ranges:

• Negative: 0-99 units/mL
• Equivocal: 100-120 units/mL
• Positive: >120 units/mL

So a reading of 100 is kind of neither here nor there unfortunately.
It's horrible if you suspect your father was undiagnosed, I went through it with my mother actually, she died at age 55 suddenly after a holiday in the sun. Knowing what I know now she probably had APS and Lupus and my doctor agrees, but it really does no good to dwell on what could have been I'm afraid as much as we want to at times ((((((((Angie)))))))

I wanted to wish you good luck with your MRI, do let us know how you get along.

love
Lily

 

[Amanda F.]

Wow...I hit on this thread when I searched for "emphysema". My mother died at 63 years old from emphysema. She could barely breathe in the last few weeks. She was in and out of the ER and on oxygen (but continued to smoke). I don't believe they ever did a biopsy of her lungs. And I suspect the emphysema was dx'd based on 1. the fact that she was a smoker and 2. doctor's exam. I'm not sure they ever did anything other than an xray.

She ended up on a ventilator. She almost wasn't able to come off of it. After 4 days, she was able to breathe on her own. And then she had to go thru rehab for a couple of weeks. Then she came to live with me. We were slowly weaning her down off the prednisone. And she was doing great resisting the cigarettes too. I had started to suspect she might have Addison's disease (nauseated all the time, wasting and frail, poor hair texture, urinary urgency/incontinence). I convinced her to get a blood test. Well...she wasn't quite low enough to be dx with Addison's - but she was barely inside the normal range (same as me). As we were weaning her down to 5mg per day, I could see that her depression was returning and she didn't seem as dedicated to "never touching a cigarette again". Sure enough, once we weaned off completely, I noticed her breathing was very labored again and she just seemed unwell. I hope you all won't judge me for this, but I convinced her to let me keep her on a low dose of hydrocortisone. And I remember her telling me, "You're a genius. I feel so much better. Really, you're on to something.".

Then there was an odd episode about 3 or 4 weeks before she died. The doctors in the ER couldn't figure out what the problem was. They guessed TIA (mini stroke). It started at 2am when I heard a bang then 30 seconds of silence and then "bang" again...then 30 seconds of silence and "bang" again. I went downstairs and found her in the kitchen trying to fill a small pot with water. But her arm was so weak that when it would fill, it would drop and hit the bottom of the sink. I watched her for a few minutes trying over and over. I walked up behind her and said, "Mom, what's going on???" and she didn't seem to hear me. So I repeated the question louder and she still didn't seem to hear me. Finally I touched her arm to get her attention and she looked at me dazed and confused. Her speech was slurred...she was confused...disoriented. I looked her over for signs of a stroke (didn't seem to be any) and then sat her down and called an ambulance. The medic later told me she tried to put a lit cigarette in her pocket. I met them at the ER and she was so disoriented that she tried to use the toilet without pulling her pants down. She was very, very out of it. They gave her an IV to hydrate her and an oxygen mask (and probably steroids!). Within 6 hours she was back to normal.

But I'm obviously no genius. And this is not better late than never. And all I can think is OMG, what about my kids?! They both have headaches. They're only 6 and 10...

 

[x_claire_x]

Hi Amanda..... This thread is 8 yrs old...not sure how many are still around from this thread. I will close it now but obviously leave up your post as it can be very helpful to others. If you wish to start a new one on this topic please do feel free.