Huhghes Syndrome and a whole lot mine!

[cleanerug]

I have been diagnosed with Hughes Syndrome 6 years ago. Just went to the Hellen Diller Cancer Center----UCSF. They say so few have Hughes and even rarer in men. In the past 4 years I have had 2 limps taken from the male breasts. I brome my spine a while ago. I had 20 titanium rods installed. 3 years later theyhad to come out due to a horrible infection, a 5 hour surgery. I am allergic to heparin. Tried Lovenox and Arixtra and got 2 cases of H.I.T. Beem doing 4 shots, 28 per week of Iprivask. I am always nauseas. I shave my body and only wear a tank top and shorts. I am unable to controlmy body temperature. I always turn beet red and have to be near air conditioning. My memory is going. I am in a wheelchair now 85% of the time now. No doctor can help me because they know nothing---Kaiser. I am always throwing up. I have been on an opiate reduction program which is good. But, my life really sucks. Anyone out there with any of this crap? Joe

[MaryF Administrator]

Hi, sorry you have had such a rough ride to date. There are members on here in the USA who can probably help you with more localized knowledge. However I will also enclose a link with some names on. It is crucial you have a consultant who understands Hughes Syndrome/APS in it's entirety. It is also important to look at your levels of vitamin D, your B12 and Iron, (Ferritin). Also to regularly look at your thyroid to see how that is working.

apsaction.org/

Please also have a good look through our charity pages which contain useful and up to date information, also recommended books for sale written by expert doctors anda also patients themselves. hughes-syndrome.org/

I will also add that we have many male participants on this forum. MaryF

[cleanerug in reply to MaryF]

My vitamin d is e tremely low and on aupplements. My ferretin sits at a 13. Have had multiple iron infusions. Thyroid is screwed abd teatosterone level is at 9. I am very sick and every day. I am always throwing up and 28 injections of iprivask is awful. Thanks. Joe

[MaryF Administrator in reply to cleanerug]

I hope you find the help you need, the thyroid struggles with medication if iron is low. wishing you luck with finding the right medical consultant, don't give up. MaryF

[cleanerug in reply to MaryF]

I have my ferretin done monthly and have had several infusions. My B12 is low and I am taking a supplement that helps a bit.

[cleanerug]

Here in America very little is known and they seem to care less. If you say you have cancer everyone can relate. You say APS OR Hughes Syndrome and it is what? I feel alone, my wife is an alcoholic that only cares about her family and I struggle every day. I feel so alone. And having my other medical problems makes everyone stay away from me. I have no friends. No acquaintances. Norhing but my Service dog which i now need. Alot of depression and many doctor appointments. Joe

[Lure2]

Hi,

I see how difficult your situation is. I do agree with Mary who knows this illness well and I also know how difficult it is to have a doctor who understands.

Hope you can find some Specialist who can give you treatment because this illness is treatable. What more can I say here from Stockholm than wish you "good luck" with your health.

Kerstin.

[cleanerug in reply to Lure2]

I have been at this since 2008. Been to UCSF and every Kaiser i northern ca. Nobody knows anything and im being told to seek the professionals. Im sure that i have had more picc lines, more tranafusions and infusions. 2 tumors removed from both breasts. No IVC filter because of extreme clotting. 3 back surgeries with titaniym rods installed and then REMOVED 3 years later due to infections. Blood clots in both legs, thighs, 1 in chest, 1 clot in shoulder. 4 injections every day and open weeping ulcers in both feet. I have been to everyone. They all say its too late. If proper intervention maybe. But thats wgen this Hughes showed up. They would do blood draws and i would have CHUNKS in my blood of fibrin. Im dying and nobody can help me. Its so loney. I am married but she doesnt understand or want to. My 2 boys have their activities. Its just me and my service dog. I thougjt that this blog would be more than--'oh talk to the professionals. I have been now for 6-7 years and nobody knows anything. Indstead of offering me a support group, my hematologist says see a psychiatrist.

[MaryF Administrator in reply to cleanerug]

Your blog has been read, and like many people you do need the right professional rather than one with only half the knowledge to help you, this way your life could improve with the correct care, it is the same for all of us, many people on here have been helped and had their life changed around by receiving the correct care. You are NOT the only one to have had a long and difficult path to diagnosis, I had the same, and many more also with very complicated and stressful events, which changed after finally meeting a specialist with literally the specialist knowledge! That is why I sent you the APS Action list so at least that was a starting point. However if you are depressed also due to how ill or and frustrated you have been to date, it does not hurt to have mental health support as well as the support needed for your physical conditions. MaryF

[Manofmendip in reply to MaryF]

I fully agree with what my colleague, Mary, has told you.

You need to find a consultant who is fully familiar and experienced with APS/Hughes Syndrome. I hope that someone on here from the USA replies and has some guidance for you.

Dave

[cleanerug in reply to Manofmendip]

Thank you. I have spent so far 6 years looking for help so far.

[cleanerug in reply to Lure2]

Thank you

[Lure2]

Hi again,

Have you looked at apsaction.org

APS doctors in other countries than the UK that are known to this site as APS-Specialists. Try it also please. Do never give up.

Kerstin

[GinaD]

I am so sorry to read your posts, and as hard as it seems to be for UK patients to reach a diagnosis, it is harder here in the U.S. My diagnosis grew from a conference call of old high school friends/now doctors who consulted with each other by phone after they heard of my series of ER stroke visits. They knew me from school and knew I was not a nut case and that my seemingly unexplained. symptoms were real and not manufactured from some deep mental issue.

( and I keep asking: if I'm making up the symptoms of a mini stroke, down to MRI results showing damage-- would someone please tell me how I'm doing this so I can patent the process? I'd be a millionaire in a week! )

My friends talked with each other on the phone, then called my husband and arranged an appointment with a hematologist in another state and I had my diagnosis and treatment.

If I had not happened to know all those high school buds who knew me and cared enough to intervene, would I be alive now?

Good luck! And keep searching. You're on a "right doctor" quest. Post here, or message me any time you need to dialogue with a sympathetic ear.

[cleanerug in reply to GinaD]

Thank you. I am doing my best.

[cleanerug]

Thank you. My hematologist seems to know nothing. I am a poor person on medi cal and i just cant find anybody that knows anything. I went with a referral to UCSF HELLEN DILLER CANCER CENTER. They couldnt help me. The excuse is we know so little. So here i sit with no answers or anybody wantibg to go the extra mile for a person in real need. I do 4 injections everyday of Iprivask because i am allergic to HEPARIN. I dont know where or what to do. The medical community here in nodthern Ca. have no interest in my case. But, thank you for your time. Joe

[Hidden in reply to cleanerug]

hss.edu/lupus-aps-center-of...

I would contact them..for referrals on the west coast.in the forefront of APSresearch and treatment

[cleanerug in reply to Hidden]

The problem i have is i am poor. Medicare wont pay for any of this care.

[jetjetjet]

Hi Joe --so sorry to hear your troubles with this dis-order

There is a Gal from Oregon or Washington state that has lots of troubles -maybe she will see your post -- I am in NH as far west as i could be from you- don't give up -- I am going thru somethings myself so i know how you feel all to well .

let us know how you get along . the APS action is a great start - Casey and i --- Casey is my service dog

[cleanerug]

I have a service dog Moose and he helps with the hard times. Im just so sick with numerous medical problems that we dont know where to start. I see my hemotologist next week. Looking for a support group out here but have had no luck. Even UCSF is without knowledge of this Hughes Syndrome/APS. Joe

[mburns1401]

Hey man. So sorry for your troubles. What a nightmare--makes many of us realize how good we have it. Anyway, in the SF Bay Area I've consulted with two docs with APS knowledge: Neal Birnbaum (Rheumatologist) at Cal Pacific Med Ctr and Lawrence Leung (Hematologist) at Stanford Med Ctr. Not sure if they have Dr. Hughes kind of APS expertise, but both are very bright and tops in their fields. Don't know if they can help, but it's up to us as patients to turn over every shell on the beach--for our own peace of mind that we've done all we can, and who knows, maybe some day we'll find a pearl.

[designer16]

Hi Jo

I live in California & have Kaiser insurance. I became fed up with them, they were doing nothing & I was going down hill fast. They did 1 back surgery that didn't heal. It was done again but with much more hardware. I was so sick & had so much pain, I was in the ER every couple of weeks because the Drs. wouldn't see me. If I had a $1 for every time they said I wish I knew what is going on but I don't have time to figure it out. The last straw was when they gave me IV prednisone for a week. It made me worse. I finally was fed up & after reading the Hughes forum I went to London. I saw Prof Khastma. He asked why I was there, he said you know you have Hughes. I told him Kaiser told me it went away because my blood test was negative. He told me my history tells me I have it & that it doesn't go away. Unfortunately, Drs. Have got so used to sending us for test after test they don't know how to diagnosis people without them. I have had to educate the Drs. At Kaiser & when I get one that won't listen I move on. I feel like I have to be my own dr. The probably with Hughes syndrome/APS is the little tiny vessels get plugged with our thick blood & they can't see them on a MRI or CT. Now I go to London every year& see Prof. Hughes. He tells me what to do, then I come back here & tell my doctors. Eventually they do what he says & it works. I am in a wheelchair also. I go to pool therapy Kaiser pays for 2x a week. I am finally improving. Personally I believe if you want answers & you want to get better; read all you can & go to see Prof. Hughes. UCSF doesn't know either. Been there done it. Tried New York. Don't waste your time or money. This is my experience.

I hope you the best. Designer16

[shardavis3]

I am in San Diego and have kaiser. I too have had a hard time. Close to death with multiple dvts and pulmonary embolisms. Necrosis in my lungs. Mayo diagnosed APS from the lung biopsy. Kaiser only lists as blood disorder and put me on lifetime Coumidin . I think I also have thyroid but tsh tests are borderline. If the blood tests are not definitive they will not treat.