Hi Kerstin! Thx for ur response! I must clear something I've been hiding since I've seen that NYC SPECIALIST IN APD ! This particular Doctor, He said some things to me me that not only scared the hell out of me, but from what I know and from what Dr. Graham Hughes just wrote in his blog, I know now that I shall never go see him again! He may be very smart in research, but I test doctors with my knowledge and he failed a major test that I knew to be true! Dr. Hughes just completely confirmed that for me! He may be a great researcher and help many, but he disagrees with the man who discovered the disease! I went to a very good private hospital in Long Island, NY due to the fact that I had severe tummy pain that no painkiller got rid of! I was throwing up and slight diareah! I thought a flu virus, but lasted too long! Three doctors saw me and my heart rate fell to 40, I have a very fast heart rate and take a medication to slow it down! That day I cud take no meds cuz I couldn't keep it down! Thank God! I told a 3 docs what I had and they looked at me like I had two heads! I told one of them Shud I spell it for u so u can look it up! They gave me 5 mg of morphine that did hardly anything and let me lay there for 5 hours screaming in pain! I never screamed once during labor and like my sister have an extremely high tolerance to pain! The nurse I had screamed at me for crying out in pain that I was bothering the other patients! Up hers! Wen the next nurse came in I got 2 more mg of morphene and kindness! Then a CAT scan w/o contrast as I'm severely allergic to it! They told me to go home I had stomach adhesions from 6 previous stomach operations! I had no one there for me! Went in an ambulance and came home in a cab! How sad was that! Everyone has their jobs and their own lives that are soooooo much more important than giving back to a person like me who has been at the side of everyone who has ever been sick! Never again will I be there for anyone! I'm so very on my own with all this! I went to a new RHEUMOTOLOGIST that diagnosed me 20 years ago with fibromyalgia! He also failed the test, but I like him and will show him and the other doctor, Dr. Hughes blog to prove them wrong! Omg what do I have to do come to England??? I'm ready to throw in the towel! Thank you Kerstin and Mary Dave Not so fab & all who respond to my helpless issues here in America! Any suggestions! I've been to the top and he not only disagrees with Dr. Hughrs, but is an Acadamien and brilliant professor who wants my family's med records so he can research and maybe get an award and do another conference with another number! I'm human being who feels! How dare they disagree with Dr. Hughes! Not my local Hemotologist, but he needs to c this blog about me being anti coagulated too! I'm mad as hell and fed up with all of these doctors who don't always get the condition. Get with the program America! Australia seems amazing from what I've read!!! God Bless You All
The truth shall prevail!!!: Hi Kerstin... - Hughes Syndrome A...
The truth shall prevail!!!
What is the failtest?
Sorry you're having such a hard time. What did this dr say to make him fail your test?
Hoping you get answers you need soon x
Ok I ask a question about something I know for a fact when they give me the wrong answer I know! I asked him about SERO negative just out of curiosity! He said he don't believe in SERO negative! At some point he got angry with me because the 3rd time he said I was a complicated person with a complex medical history I sat there in the state of shock and From that moment on heard nothing he said! He had already failed the fact test! My Rheumy also failed and I will get my blood result tests and sho him Dr. Graham Hughes blog as to how important it is to be anti coagulated! My INR with the hi doses of warfarin was 1.2! I was on phone with my sister and she said I'm not making any sense, and that the headaches everyday are Guna give me a stroke! I actually have memory lapses, almost like how did I get here or did I take my medicine! My sister asked me if I had any Lovenox shots in the house! She begged me to take a shot with or without the docs permission! I did and felt better the next day! I thank the good Lord for Dr Graham Hughes everyday! My testing methods shud be used by everyone! How DARE ANYONE DISPUTE DR.HUGHES! I live on Nassau County Long Island, I went Hughes syndrome USA and found out of one APS Rheumy! I will give my LI Rheumy another test and show him Dr Hughes blog and say to his stupid face how wrong he is! I'd like to go bak to NYC TO give that doctor a price of my mind! I know I'm complicated, he don't need to tell me that just cuz for once in his life his Godlike attitude came across a patient he CANT FIGURE OUT! He's not with $ 625.00 for me to drive into Crowded Manhatten! He's an amazing researcher and needs just his lab not people to get mad at because his brilliant brain can't figure me out! How dare he belittle me with his anger and telling me not once, but 3 times how complicated I was!!! Omg! Then to go to a big hospital, although private, get treated DASTARDLY BY NURSES SND PHYSICANS TO LEAVE ME 5 hours screaming cuz I had no one there to be my advocate! No leg to get up and knock the hell out of that nasty nurse how dare she! Monday I will call the Administrator and complain! If I can't get to St. Francis Hospital, I'll die first! St. Francis is a famous Heart Center that President and Mrs, Reagan came to visit because they help for free children and save lives! Kerstin when I went there and that one doctor said I've actually saw the tiny blue embolis crawling up my leg he knew! He calls over other docs and nurses to show them cuz he said you'll probably never see this again! In 2 seconds flat he ordered Heperan drip and DILAUDED, the strongest pain killer around! Now that's not only a doctor who knows, but a human being with feelings! I will call my doctor on Monday and tell him my headaches and stupidness/ confusion will strike me out and he better do something after 6 months of not being coagulated! I already lost my leg and don't want to loose my brain and my ability to speak with the great knowledge I have in my brain! I have more brains and compassion in my little pinky than that doc in NYC! His annoyance when I spoke was too much for me to take and God help the next doctor who refutes what Dr. Hughes says, I'll cut them down off their hi horse that they'll feel like they are playing SEAHUNT IN THEIR SPIT! I'm mad as hell and won't allow any doctor to belittle me and make fun of me again! Yes Dr. the doctor made fun of me at one point and after growing up a redhead with freckles, a last name of WEBSTER THE DICTIONARY, and stuttering and being made fun of and bullied, DONT EVER IN MY PRESENSE MAKE FUN OF ME CUZ ILL CUT U RIGHT DOWN! I was in too much shock to cut him down! I'm sorry for all this, but I'm done my whole life of mistakes and misdiagnosis from doctors! If I'd have opened my big mouth last year to the idiot doctors who treated me badly during Cheistmas week, I'd still have my leg! Thank you for this forum I love answering people and helping people as best as I can, but my kind brilliant medical expertise is waning away! I forgot more than most doctors know!!! I've worked almost 40 years in the medical field and treated my patients the way I want to be treated! Good Luck in all your endeavors and GODSPEED! Maybe one day I'll accept that invite from the beautiful lady that said she'd make ME A CUP OF TEA!!! Thank you tea lady for that! The offer is more than I get here!!!
Thank you Debb. So many in so many countries are failed by many Dr's lack of knowledge about APS.
I walked out of a consultation with a neurolgist when he told me APS didn't exist but had been invented by the likes of Prof Hughes and his team to get glory for themselves. He also said that forums such as ours should be shut down as they give people a platform to talk and invent/make up new illnesses and symptoms!
Dave
Thank you Dave I just wrote another post, the truth that I've been hiding about that famous Dr in NYC! I was so afraid to speak the truth on this forum because everyone on this forum has great respect for him, but Don't in my presence refute what my hero Dr. Hughes says and then make fun of me cuz I may have said something! He's very proud of himself and wants my family's med history and med records so I and my sis can be another one of his bloody statistics!!! How dare he!!! Dr. Hughes founded this dreadful disease and if anyone ever in my presence does that again they'll get a young lashing they shall never forget!!! Lol... God Bless you Dave and thx for ur response!!! You admins are the most SELFLESS HUMAN BEING IVE BEEN LUCKY ENOTO KNOW AND YES I DO KNOW AND LOVE YOU ALL!!! Godspeed!!!
Hi debs. Sorry to hear you are having such a bad time. I was once used for research purposes by a medical doc. who specialized in (platelets) .before I was diagnosed with autoimmune problems I started with bruising and nosebleeds , I saw him in his rooms privately and he kept my notes separately.this went on for years ,and when a doc. at work suggested I might have Lupus ,I told him this but he got a bit angry and told me that doc. should never have said that and never followed that up with blood tests. When he finally passed me over to a haematologist who did the blood tests and passed me straight onto Rheumatologist because they were all positive . Better late then never I suppose ,I eventually got sorted ,but by then it ha d affected my brain .So the moral of this story is look after yourself,never give up and find out as much as possible about this disease and most of all stand up for yourself .hope you get sorted soon .all the best Elfie .
Hi Elfie wow it seems so very sad that every single one of us with APS has suffered at the hands of docs! O just don't understand why in this day and age of such technology we still must suffer at the hands of the professionals! Why ??? Not fair sometimes I just want to give up,but keep going and nw I'm soooooooo very angry I'm going to fight the finish! I wish u good health my dear Godspeed
Hi Deb,
The Lovenox you took made you write a long excellent answer. You are so right and you are not alone here.
Like Dave is saying so many here have had Doctors who had humiliated them and made them feel like hypochondriacs and insane. They do not understand APS but think it is something psycological and say they should have something to sleep on.
We understand what you are saying as we are in the same boat.
Now I just wonder what you are going to do to be properly anticoagulated for good and also stable?
Hope you find a Doctor who understands. He will help you but you have not seen both a gentle and nice and also knowledable APS-Specialist yet I guess. Take paper with you as Mary has suggested several times from this site and show them.
Good Luck from Kerstin
My reply just posted before I was ready.
If you don't want to go back to that doctor, please tell your hemotologist or whomever you find that you took the heperin anyway and felt much better. I'm so sorry you are going through such a terrible time while doctors are disagreeing.
Deb-- I'm a little confused. I thought you had been diagnosed with APS already. Did your blood tests come back negative and now that doctor says you don't have APS? And is he not allowing you to be properly anticoagulated?
I have asked and been told that no rheumatologist at that hospital believes in seronegative APS. I've read some of the literature on their website where APS specialists say they don't believe in sticky blood like Dr Hughes does. Of course, I suspect they then won't try a heperin trial as Dr. HUghes suggest, and they won't see that it works with some people. I think they are very afraid of high INRs, as Dr, Hughes suggests. And they are the top experts in the US. And if the top experts in our country say that I doesn't exist then people who have it are going to have a great deal of trouble getting help.
I think the only thing that will convince them is a large double blind study that proves that Dr. Hughes is correct, and how will they chose their subjects if APS is rare and I am guessing variable among the people that have it?
Oh, trouble posting this. I need to take my aspirin to clear my head. Hope you can understand it.
No I just was asking him a question about SERO- neg and he said he don't believe in that! But he made fun of me! I refuse that to me it's intolerable! I was telling him what happened to my leg wen I went to St. Francis hosp and the ER doc saw these blur emboli crawling up my legs like blue spiders and wen that happened he called over other doctors to c it and nurses too! He said they'd probably never c this again and the doctor mimicked me and made it like it was no big deal!!! He was PIST cuz he Godlike he is couldn't figure me out! Yes not so fab I'm done! Monday I will call my Hemotologist and tell him! I'm on my way home from my sis and the headache never goes away! It's getting bad now and I'm stupid again! My left eye must stay closed cuz the light and pain! Does anyone else out here have a constant headache wen NOT ANTICOAGULATED??? I need to take another shot now! It's almost like my left eye blind! Blurry!!! Need to lay down!!! I'll be fine soon! Thank you Ann and everyone for their caring responses! Godspeed
My sis says I must go to England! Yes I shud! Maybe one day she's been there alreaady
That's amazing! My sis told me to write down what I'm going to say to doc D my Hemotologist after having 1
.2 INR why didn't he do anything else at time for me? I'm so sorry u had to go thru hell too! Ur very funny tho! I enjoy u very much and appreciate u too! You're a kind soul!!! Y do we have to be our own advocates don't they see??? It's frustrating to have to fight everyday of ur life, for ur life!
Hi Baba love that name!!! I call my babies that!!! Lol!!!!
I'm sorry you are having such a bad time. Please make sure your hemotologist understands that you are feeling much better on the shots. Also, I hope you will stay on the plaquenil. It takes time to make a difference, but hopefully it will. No one should have to scream all night in the ER and get nowhere.
Yes Ann thank you! You all are so very kind to me! I don't know what I'd do without this forum! If I ever can b if any help to anyone I sure will!!!
Hi Debb-sorry I am responding so late to your post. I just read it and understand your frustration completely. I know you don't need any affirmation but just know that I am one example of many who tested sero negative. I had a dvt/pe in 2011. Diagnosed LA positive. Was on Coumadin for a year. I received inferior care that didn't take care of me or educate me. They tested me again after the year of treatment. I tested sero negative and stopped Coumadin treatment. I was fine other than usual side effects of APS. Headaches started first then vision and brain fog. I then had/have imbalance issues. Then in 2015 had another dvt/pe. Still LA positive. Eliquis for life now. You are so right about the inferior/uneducated and just complete denial of US doctors. I know what we go through every day here in US. I have received same treatment as you and had to explain my self and my condition to many medical idiots. Godspeed Debb, I hope you get the care you are deserving of and keep fighting. I know I will...for my self my family and everyone on this community. Wishing you the best always.
-Noelle
New to APS Scared but relieved
Professor Graham Hughes' March Blog 2016
A really nice Neurologist - and yes I am telling the truth!!!
My son in his twenties with the similar symptoms to me??? Advice needed
