Haemotologist....

[kmac42]

Hi all just wondering how other people get on when going to see a Haemo who doesn't know much about APS...when seeing the Haemo i told him as well as other symptoms that I get very exhausted...he said there was nothing in my blood to cause this...i'll be going back to see him in a few weeks time and am quite worried that even taking in info for him i'm going to hit a brick wall...

[Hidden]

I recommend seeing an MD that understands autoimmune disorders....My APS was diagnosed by a RHeumatologist.....and she tests me every 3 months for other Autoimmune Disorders....I also have unspecified mixed connective disorder......she says if you have one AD chances are you'll get others

Are you in the UK, US????

[kmac42 in reply to Hidden]

Hi Luisa I'm in Hamilton, New Zealand...I was referred to a Rheumo, must chase this up as i'm going through the public health system...i've never heard of that disorder...thanks for you input

[Hidden]

correction Unspecified Mixed COnnective Tissue disorder

[Lozzer]

I think you can already sense what you should do by what you have said in your question kmac. I am very fortunate to have a haemo who understands APS very well. Even if yours does elect to take on board the information that you provide about the syndrome, you may well be far better off searching for one who is already familiar with APS and that doesn't need convincing of the symptoms.

[kmac42 in reply to Lozzer]

Thanks Lozzer...i think i just get a bit anxious dealing with them...i feel like i talk until i'm blue in the face so to speak...all i can do is take the info with me and go from there...

[Angelpaws in reply to kmac42]

Hi Kmac - I feel like that too, so you are not alone. I was brought up to believe that doctors were super heroes and knew everything about every illness, and that you should never challenge them - or indeed anyone in authority. I know that's not true now, and we have to accept that most trainee doctors at Uni slept through the one lecture about sticky blood! The worst thing about it all is that you always seem to need to fight for support when you feel at your most vulnerable and have no strength or brain power to fight. I know you don't feel like it, but go there and EDUCATE!!!!! Good luck and stay positive (and I'm not talking blood tests!!) Larraine x

[SueLovett]

Hi K,

I live in the UK but would you believe I've been to Hamilton NZ. My nephew lived there for a year when he was there as an Osteopath.

x

[Lozzer]

I believe that having a relatively unknown and potentially life threatening ailment is enough cause of anxiety. As Angel said, in this world of increasing specialisation no single doctor can be well versed on everything. The choice as I see it is to either start from scratch with a yet unconverted haemotologist and suffer the resultant delays in effective treatment or seek out one who is already broken in and can commence helping you immediately. Its worth travelling to find one. Which country are you in?

[Lozzer in reply to Lozzer]

Sorry just read that you are in NZ. I'm in Oz

[Hidden in reply to Lozzer]

I live in the US...but I always recommend that one research the closest "teaching hospitals" and speak to the Rheumatology department AND ask for referrals to Rheumatologists who understand Autoimmune Disorders....of course, I am not well versed on other countries....In the this are it it the Rheumatologist's who diagnose Autoimmune Disorders.....however, most folks believe Rheumatologists dealwith rheumatic disorders....arthritis and the like

[Hidden]

Hi

my bloods show that I am not anaemic so my rheumatologist won't give me iron to give me more energy but he has just prescribed me Hydroxychloroquine which he says MAY help my joints and combat fatigue. I have APS and am positive for lupus.

[Hidden in reply to Hidden]

I take 4 baby aspirin for my APS...and so far my blood is "normal range" and I take Hydroxycholoquine for my APS and my Unspecified Connective Disorder Disorder

My MD says the the Hydroxycholoquine slows down the immune response,,,,I if if our immune system should be running at 30 miles per hr....and ours is going at 60 MPH the medication slows it down....I find this description helpful.....and with the a few "flareups" every couple of months I have been feeling well.....

If I begin to feel unwell as see it as my immune system "believes" there is an "invader as in going on the attack"....so I take an Ibuprofen (anti inflammatory)...and if I have been working in the garden I begin to feel unwell I take a Benadryl (ie an allergic reaction is also immune related)......can't hurt.....so these are my home remedies ...

and of course I see my Rheumy every 90 days

[jean48]

I only see a Rheumatologist.

[Leigha]

Went back to my hematologist who promised to check all my blood levels for my APS. HA HA. She did a standard blood test, nothing out of the ordinary at all. I was very disappointed. Cancelled the follow up appointment. Called my regular doctor with names of tests I needed and she kindly ordered them for me.

[Hidden]

Hi Kmac again....I had to travel 1 1/2 hours to find an MD who diagnosed me.....I had been feeling unwell for years and no MD in my area thought to test me for Autoimmune Disorders!

I ended up going to Dr. Gaito because she is a specialist in Lyme DIsease (epidemic in my area)...that is what I believed I had......when she tested for LD and I was (-) she apparently decided to test me for Autoimmune Disorders (I never asked her ...I never even thought about ADs....) and she called me and said "You have tested negative for Lyme and other tick borne illnesses but you have "sticky blood "...and then proceeded to explain......

Dr, Gaito says only 1 in 10 AD are diagnosed because MD's don't know much about them.!

As I see it Dr, G potentially saved my life....I am 64 yrs old....and other than my Autoimmune issues in perfect health.... my paternal grandmother was in good health...and she had a devastating stroke at age 66.

Oh...and I live in the Hudson Valley Region...2 hours from New York City...wherein the Cornell Weill Hospital for Special Surgery has a Rheumatology Department that does extensive research on APS and other Autoimmune Disorders...and the MD's in my area are clueless.....

[DelH]

I was lucky when first diagnosed that my Haemotologist was very knowledgeable about APS, explained everything and our 6 monthly appointments were a great help. Then he retired............and that all changed. His replacement doesn't seem to understand APS, and I am not convinced that she even accepts that the condition exists. She tells me that all she can do is comment on my INR readings, and that there is NO proof that APS symptoms lessen with a higher INR. I have pointed out that I know when it is high or low due to my symptoms, but this makes no difference. She has now said that she only needs to see me every 12 months, which is actually a relief as I find the appointments a complete waste of time. I have been referred by my GP to St Thomas's so hopefully I will feel that I have someone on my side once again!

[hasmoxie2]

STOP!!!! Why would you go back to see him!!! Call around and find one who is familiar with APS!!! Sticky Blood! When You call to make appt - ASK if the dr knows about this RARE disease. Tell them that if you come in and he doesnt know - you are not going to pay. Then ask now again - are you sure he knows?? Can you ask and get back to me before we make the appt?

Why isn't there a LIST of doctors in London or what ever country you guys are in. Here in the states we have a list of doctors that WE gave the names to so we KNOW the docs know about APS.

For those of you who have doctors who know about Hughs/APS can you list your area and give your doctor? It's like a friend giving a friend their doctors name - or two. Even the doctors who DON'T know about APS should be listed so somebody else doesn't go to them and maybe from the doctors bad advice - has a stroke becauce the doctor did nothing.

We - you - will just be helping each other out.

debi in Fl w APS

[kmac42 in reply to hasmoxie2]

Hi there...I went to see him because he is through the public health system and is free...i can't afford to go privately...i'm in New Zealand and don't know of a list of doctors who specialise in this...

[hasmoxie2]

yikes!! sorry! Well if this is the DOC you have to have - educate yourself so you can educate HIM (or her). Go in there prepared with info - EVERYTHING you can find on APS and meds people are taking. Then you can tell him just because you HAVE to come to him - doesn't mean you don't deserve the best treatment just because HE is UNAWARE of this rare blood disease.

The more you read up on it, the more you will find similiar things and more info on APS. Print some out for him to read. See if there is another doc you can see - if not - you educate yourself so you become like the doctor.

HANG IN THERE!!!

debi in Fl w APS