ss/lupus/ttp

[HeyRae]

hi guys, spent 11 days in hosp. 2 weeks prior when i went to PC Dr for followup for shortness of breath/tight chest (he said it was asthma) not! put me on inhaler but took aleeve that worked better) I told him I was having vision probs. blurry & flashing little lights, had a rash on my chest, then when I asked why my wh blood count had been low he told me some people just have low count) anyway next thing I know I had a TIA (mini stroke) Oct. 4, I'm fem 49 dx Aug with SS/underlying lupus. I was very anemic was given fresh frozen plasma, 3 days later sent to another hosp for plasmapheresis. Went into an. shock after 3rd treatment. My blood is back to normal now I'm weaning off 60mg pred. still feeling foggy though, not getting much sleep? saw Dr Fri because i have a tiny lump with ( I think its a suture or piece of tape) something very small/white is protruding out of the skin where they inserted the catheter in my jugular vein 6 weeks ago.PC Dr said maybe dissolving suture wait 2 more weeks. When I asked PC Dr how would I know if anemia was to come back he said to ask my hematologist! who is great but wants to put me on Ruxitan. PC Dr also has never discussed anything that happened! I'm so done with this HMO Dr! anyone else have any input/help to what I've been through? I'm ok but a little worried it will happen again.
Thanks, Rae

[Scottietottie]

Hi Rae 

Welcome to Sjogren's world. With lupus and SjS we never do know what is going to happen next. Sometimes nothing happens for a long time. It's really unpredictable.
You need a team of doctors you can trust with one that sort of coordinates. It's handy to keep your own records in case docs aren't 'sharing'. Off the top of my head - and I'm not a medic, so this is guesswork, I reckon you could do with a haematologist, a rheumatologist, an opthamologist and pulmonologist. We do tend to collect 'ologists' but there doesn't seem to be any way of getting away from it.

A rheumatologist is often the first port of call for both lupus and Sjogren's and could put you on meds to halt the progression of disease.

Take care - Scottie 

[Heather Bell]

Hi Rae
I have found it is most helpful to gather and record as much info as you can, then when a doc says for some people that is normal, you can say well not for me, my normal count is....
I have wanted to strangle a few doctors in my time, fortunately I have been to weak to do so.
I hope you have gained some reassurance by now, it is very scary when you can practically hear the swish of the grim reapers cape and medical profession is acting like its no big deal.
Good luck
.
Heather