Having really rough time. Isn't 2013 wonderful! Just been diagnosed with pulmonary hypertension to add to the list.

[jayniey]

Pulmonary hypertension, severe COPD, Marfan, Lupus, Ehlers-Danlos, left side paralysis (including diaphragm), +++

Still, I should be grateful, if I didn't get bad luck I'd have no luck at all! I'm lucky really, if there's anything going I'll get it.

Nutty as a fruitcake thats me! Hope you all have a better less painful start to 2013 than I've had. Ciao 4 now.

[Sher78]

Bless u jayniey. Nutty as a fruitcake IS the way 4ward though ;0)

[jayniey in reply to Sher78]

Oh yeah sweetkins! Lets set up a club for nutters. U2. XX

[field]

Hi jayniey, I understand a little of how you might be feeling. I was told that I had pulmonary symptoms with high blood pressure. I cannot expand my left diaphragm fully and get breathless on exertion. I also get left sided pleurisy. I have been doing some research on diaphramic involvement in lupus, but so far I have not come up with anything conclusive. I would appreciate any info you can share or anyone else please. I hope that the new year proves to be a little easier for you. all the best.

[jayniey in reply to field]

They're not sure if its always been that way or whether the diaphragm is from the

Lupus/Marfan/Ehlers-Danlos syndrome thing. I did have an accident at work in 94 that left me with left side paralysis so it could also be that. I'm waiting to go into the pulmonary vascular disease unit at Papworth at the moment. If I find out any more I'll let you know. XX

[letslaugh63 in reply to jayniey]

hi i'm just a nut job,well that's how it feels.not been diagnosed just at the lets get tests done but found this comment interesting as i fell over landed on elbows mostly left side and symptoms got worse, infact could this have started new symptons x

[jayniey in reply to letslaugh63]

I noticed after my accident (hit over the head and left shoulder by 200lb steel post while unloading my lorry) that everything got worse and are still getting worse. I'm not really a nutter, I've got a certificate that says so, mind u the shrink is now in the nuthouse. I've always felt that it only takes a knock to kick off the symptoms, even new ones much worse than before. Hope u feel better soon. XX

[field]

Thanks much appreciated. Take care.

field xx

[jayniey in reply to field]

4 me exertion is getting out of my chair. Hope life improves 4U. J. XX

[Nightjar]

Thinking of you Jayniey, hoping things will improve soon. I too think that some nuttiness helps us through when life is rough ...and I just love fruitcakes

xxx

[jayniey in reply to Nightjar]

Some nuttiness! Na, go 4 it be as mad as a hatter. Can be hard sometimes, at times like this I have a go at the tv, its about all I can cope with. XX

[Nightjar]

Know what you mean Jayniey, It's up and down 'all the time' for lupies. I'm very grateful to currently be ok-ish. I'm sure you've done it before and you will again ..get through. Let's hope it is soon. Big cyberhug. xxx

[jayniey in reply to Nightjar]

Thanks sweetkin. Much appreciated. Got my appointment thru from Papworth for 1/2 so thats not 2 far away. Got a further 6 appointments for other stuff as well so got 2 try and get my act together. I know I'll feel better sometime - maybe. Can't wait. XX