Well I finally after 2 months made eye doc appt for testing of Sojerns! I'm having trouble swallowing again and hate that choking! Started to go on celiac diet! I walk and pain in rt leg disapaiting! Since I have prosthetic leg I don't walk 3 miles anymore, but can walk a half a mile! Dr. ERKAN said I was very complicated and wants me to go to eye doc so I can get approval for Plaquinil! After 2 months of putting it off I am going tomorrow! He also said I need to have genetic testing for myself cuz I have many inheritable factors! I don't want to give up my DNA for anyone at this point! If it were to help someone else I'd do it in a NEW YORK MINUTE!! Lol... I was DX'd by Dr. ERKAN with RA/Rheumatoid Arthritis! I had JRA as a child and told him that's why he tested me! I wasn't surprised because I was getting the same RA pains in my hands and swelling as I did wen I was a 6 yr old kid! I guess you never forget that pain! Is it common to get these other autoimmune diseases with APS! What else will they come up with! I know Dr. ERKAN want to help me after I see 4 doctors he told me to see, but I'm overwhelmed and disgusted with situation! I just want to b kept anticoaulated in proper way? Is that asking too much! I need to remind my Hemotologist today that at 2.1 I was having embolis in my foot! I'm scared to tell him this, but have to only because I have this emotional attachment to him and he did diagnose me!!! Too late, but he finally did!!! My best to all! I must find out if I was tested for thyroid! I was loosing my hair intermittently! My hair so thick th my beautician never noticed it! Thank you for all your support and wish me luck today!!! I must be strong!!!
Overwhelmed & Disgusted: Well I finally... - Hughes Syndrome A...
Overwhelmed & Disgusted
Your care will get better as the jigsaw is being put together, just really make sure they keep an eye on your B12, D, and Iron, plus Thyroid, as it will not help if they are low, also hair loss is a side effect of a slow thryoid, or low Iron and B12. You must politely and firmly push for your right level of anticoagulation. So you can be helped as much as possible. Good luck. MaryF
Thx Mary and Kerstin! I agree! I'm having trouble swallowing again so I see my eye doc tomorrow! He's excellent and will test me for Sojerns! I spoke to them this morning as there are many specialists there! Wen I heard who I was seeing I was most happy, because he operated on me twice and DX'd me with MACULAR DEGENERATION! I'm nervous and about to go to talk to my local Hemotologist! Got in touch with Dr. Cromwell and she thought I shud still be taking the LOVENOX shots with a 1.6 INR and I must be brave and tell him!
Thx Mary as usual your opinions are very valuable to me as is Kerstin! I did go to my local Hemotologist today, he was ok with Plaquinil! I asked him y he wants me at 2.5 and not between 3-4 INR, he did that's what was thought and the parameters have changed! I havnt heard of any changes, have you? He said he's not sure my insurance will pay for these genetic tests! He didn't know what tests or what gene Dr. ERKAN wanted! So he was suppose to send my doc papers, but never did! I knew that wud happen! He was very eager to tell me I had accompliced medical history! He said it 3 times and it started to scare me a bit coming from someone of his stature! I'm more confused now than ever! I did make an appointment with the eye doc because need his approval to go on Plaquinil for RA and APS! So I'm supposed to go to all these docs and get my testing S and med records to him! My local Hemotologist said why doesn't he take the tests he wants? So I'm in a weird place, but secure that I'll b ok! He also told me that my sister needs to c a Hemotologist soon! He said he'd be glad to c her and also Dr. ERKAN was very interested in my sisters tests and has asked for a copy of her numbers! She will comply! Also if I go thru these tests my Hemo today said it may change the course of treatment! I think it will all turn out ok and I hope I'm being just nervous and unsure of any Doctor no matter who they are! I believe in myself and the way I feel right now! Hopefully my confidence in docs will come back, but I just don't believe any of them! I think this too shall pass! I just need to take one day at a time!!! I hope you r doing well & your family well too!!! I do look forward to seeing the eye specialist I'm seeing tomorrow! He's only done me well in the past! So My attitude with him is positive!
Has Dr Erkan decided you will be on Plaquenil and not Warfarin? I think you must trust that Expert. You may feel better on that than on swinging INRs.
Good luck!
Kerstin
I'm going to eye doc today ! I've been having problems with my eyes and trouble swallowing for some time now! Having no idea that had to do with Sojerns, plus I have Macular degeneration in left eye! I must be tested for Sojerns and get approval from my eye doc, before going on Plaquinil! Yes I'm going by what the expert says! I just don't want genetic testing! I really am so sick of all this! What I'm happy about is my doc Hemotologist that I've had for 13 years said my sister needs to be evaluated by Hemotologist and he'd be happy to c her! After my eye doctor I'm stopping for a while! I just wana be the old Debbie again! I'm not, always tired and must do thing in daytime for a couple of hours b4 I need a nap! I'm not too surprise about the RA DX'd because that same pain wen I was a kid came bak into my hands! You don't forget that pain! Thanks for your input, it helps! You're an extraordinary woman like my sister says!!! GODSPEED
Is it Dr Erkan who asks you to do "genetic testing"? What is it ? For research-purpose? They do research on me as I am also unusual ( triple-positive with high titres). I am glad to help if I can.
Kerstin
I'm not sure, but if it's to help others then I'd do it! Plus he also want my sisters bloodwork! I wud say that's for research! I'm just tired Kerstin! I'm at eye doc now and as soon as I see him I shall update you! It cud be very expensive for me to have these tests! I have to pay $50 everytime I see a specialist! It gets expensive! My hubby DX'd with Alzheimer's and they found a spot on his liver! My hubby is 21 yrs older than me! I take care of his son, (my son too after 35 years) He's mentally retarded and has rare syndrome called William Syndrome! He's a good boy and I love them both, but my health and my life are very complicated! I'm just tired Kerstin and I want all the pain to end! I'm also greatful for having a DX! Bless you sweet lady!!!
Awe Bernie! I have a friend who has Colon Cancer with no insurance!!! Omg I'm trying to get her to go to her State and get help! I lost my leg and I blame Obama for it cuz he messed me up badly! I was one of those that got lost in the system! For one whole month I was without insurance and never knew it cuz the Obama care tuk ove one thousand dollars of my money and didn't insure me!!! Thank God I didn't know! I'd have been a wreck! This election is the MOST important in American History! We r angry Americans! Lol... Many Americans feel Obama is a trader to our country! I'm sorry for getting on my soapbox, but it's hard not to!!! You are such a great lady!!! I hope you live a very happy life in Beautiful Stockholm! I remember the beautiful shopping stores My Grandma took me to! I met a friend on the ferry from Stockholm! Her name wade Dorte! We kept in touch as pen pals for over 20 years!!! She was a Beautiful Platnum Blonde Seede, from Stockholm! Many beautiful memories from Stockholm! My Granma tuk me twice in the 10 weeks I spent in Denmark!!! I was 8 years old and shall never forget one moment of it! Especially the Sunday Aquavit with the special bread and LARD!!! Lol... Manga Tak! Jeg Elsker Dig! They called me their Lille Scat! I'm hoping you understand a bit of Danish! I love my Scandinavian roots!!!
Disgusted 
Manchester Specialist - Dr Thachil (haematology) at Manchester Royal Infirmary
Thank God for this website!
Triple Positive/Warfarin
