After Pneumonia/Flared on all my 4 autoimmune diseases

[Debbweb01]

Hi I have small blood clot in my only big toe on right foot, as I lost my left leg 4 years ago to Sticky Blood/APS( as we in USA call it!!! I have RA, Sogrens , BMS, (Burning Mouth Syndrome) BMS IS extremely rare. I Googled it and they say only 20,000 people in USA have it! Some people don’t believe me cuz they say can’t be that rare because some of family members have it! Trust me ITS RARE! I’m missing Lure2, DAVE manofibit, &Apsnotsofab, LYNN! Are you all OK! I usually hear from you! Mary as always messaged me! You’re all so amazing on this sit! I think I’m having micro Embolis??? You can actually see the black and blue marks when I put my foot down! Then wen I put them up they go away! It kept doing it in front of several doctors! One house doc saw it and when test results came back he said I have small blood clot in my big toe! Not sure if my favorite VascuDoc believes in Micro Embolis! He saved my life four times with my left leg amputation! I may see him Monday! Office will call me at 7:30 am tomorrow! Hope so! My hemotologist shlofed me off to go to Pulmonologist because his deco wouldn’t let me explain! Wen I called back to tell her in no uncyterms to listen to me, he then said he’d see me Friday! My Pulmonologist and Vascular surgeon said to get there right away! I did and maybe had I waited till Friday, I’d be without a big toe or fit or leg! It’s very sad my Hemotologist moved into Big group no longer Private! Therefore he has their Protocol to go by! He still cares and wanted me in the day I got out of hospital! I couldn’t keep my eyes opened! So I shlofed him off! I’m going at my convienience! First othe 2 docs who cam and cared! Thx for listening to my rant!!!

[HollyHeski Administrator]

No worries about rant - you've got a good team - keep that holiday in mind and do everything you can to go.

Big hug xx

[MaryF Administrator]

I hope you feel much better really soon. I am glad you are seeing a doctor who you trust and who understands what is going on. Start packing that suitcase! MaryF

[Debbweb01 in reply to MaryF]

Pulmonologist good, but after Fiasco With Hemotologist and his Assistant, I may return to NY CITY To Dr. Caroline Cromwell! I was invited to me adopted family yesterday, and I got there and said hello to all! I then said where’s Gina she’s only one I didn’t c? Gina said “Debbie r u ok we just a minute ago hugged and kissed and said Hello? I have absolutely NO MEMORY OF THAT??? Am I having micro Embolis??? I also developed very hi Blood pressureback in May. On meds! I’m very confused with a headache from yesterday! I guess I shouldn’t worry! I’m kind of done and disgusting with Docs! I need and want this Pneumonia business to end Yesterday! Lol... Godspeed and thanks for ur response

[lupus-support1 Administrator]

Very sorry to read your story! Hope you will have better news!

With good wishes,

Ros

[GinaD]

It is frustrating to be the bearer of an unrecognized ( aka “rare”) disease. Stay strong and I hope all goes well ( doctors listen and respond) this week!