Sue

[Suejane]

Hi everybody,

I have been reading the blogs for several weeks and often see posts that reate to Rheumotologist appointments. I am probably being really thick, but why do people with APS need to see a Rheumotologist? I have APS too, but have never experienced any Rheumatic symptoms.

Regards to everybody

Sue

[MaryF Administrator]

Hello there Sue... some of us have this APS to different degrees, and it is an autoimmune disease which normally falls to either a haematolgoist or a rheumatologist or both, or some see a neurologist. However it is normally a rheumatology team who watches and helps with autoimmune disease. Perhaps you have a very on the ball GP? Who wi regularly taking your blood and testing it, or your haematologist. It would be interesting to hear more of your set up. Some people have APS and do not have that many symptoms, others as you can see on here, have a terrible time. Best wishes. Mary F x

ps if your care is good, re your medication and the maintaining of your INR levels, then perhaps no need for rheumatologist unless other new symptoms. I think the main thing is somebody with a knowledge of the disease, ie our paediatrician is rapidly learning more and more and already knew about it phew!

[jetjetjet]

Hi sue - it took me 2 years to see a rheumatologist, he found the problems that were causing my symtoms no one else could find. they knew i had APS ,but he found the other 3 blood disorders, the a.v.n. ,osteoarthritis- S + C protien deficencys, cardiolipid, L.A. positive and since very high Beta 2 count. so seeing a rhuemy was very beneficial to me. i see a hemo ,but she just over saw my surgery . this is my opinion but my rhemy has more on the ball than my hemo.rhemy put it all together,--------------------- jet

[Suejane]

Thank you.. I have not had any issues since 2008 when I got diagnosed. Am on 14/15 mg warfarin alternate days, and penicillin twice daily (have no spleen).

I read the blogs on here and consider myself very lucky as apart from a woolly head occasional vertigo, reynauds and vision disturbances I don't seem to have any other symptoms. My target inr is 3-4 and I visit st Thomas's once a year.

I see a consultant at ashington hospital Northumberland and he seems knowledgable.

I get quite a lot of random bleeds in my hands, when my finger will start hurting, swell up and the start turning purple. Does anyone else have this problem?

Thank you

Sue

[haley in reply to Suejane]

Yes, the random bleeds were an early sign for me. It would happen in my feet. I would get up from the dinner table and feel a lump on the bottom of my foot and soon after it would be a brightly colored and painful black and blue. Within 24 hours, it would clear. My GP insisted that I had injured it, but I knew that was not the case, especially since it repeated many times and other times I would have a pain in my toe and then it would bleed under the nail and the nail would die.

[Suejane in reply to haley]

Thanks for that. We're you already on warfarin when you started getting these bleeds, or was it before? I can't remember if mine started before or after warfarin.

Cheers sue

[haley in reply to Suejane]

I was not on any medication at the time. I also did not have a diagnosis at that time. I am still not on any medication. I really could not convince my doctor that these were spontaneous episodes of bleeding unrelated to anything I had done.

[Mommaleda]

Sue,

I've had APS since 2002 (not 2005 like I keep telling everyone-ha! It's the memory thing) I've seen a neurologist and regular GP for years. Not until recently have I needed to look into seeing a rheumatologist, I'm having lots of lupus symptoms. From my understanding a rheumatologist or hematologist can help with your blood but the rheumatologist helps with the immune system problems (side effects) that can go along with having APS/Hughes.

I hope this helps! Personally, I think if you can find a knowledgeable doctor who comprehensively understands APS you are on the right track. the one thing I've noticed about becoming active on this forum is that "lots of little annoying symptoms" are related to APS. It's important that you and one doctor, perferriably your GP are in the loop to keep a overall viewpoint of your health.

All the best

[Angelpaws]

Hi Sue, it was a rheumatologist that finally got me diagnosed with APS. I had been sent to him for a look at my spine (osteoarthritis) and I mentioned some of my other symptoms and told him I thought I had Hughes Syndrome. He was really interested because he'd had lunch with Prof Hughes in London the previous week and he did everything necessary to check me out. Sure enough, I have it. That doctor, at Benenden Hospital in Kent, did more for me in two and a half hours than I had had done in two and a half years previously! It's the luck of the draw! Larraine x

[haley]

The good thing about my rheumatologist is that he seems to be looking at all of the odd symptoms was being systemic. which I have been trying to tell every other doctor. We are still sorting out whether we call it lupus, but that is certainly what it looks like. The only thing that worries me a little is that he thinks they cannot all be APS symptoms. He seems to think primarily of blood clots with the APS which I have not have.

[Hidden in reply to haley]

you explained this so clearly...thank you

[Hidden]

Hi I, like many people, thought Rheumatologists were MDs you went to when you had Rheumatic symptoms....in the US many of the Hospitals make appointments for Autoimmune Disorders thru the Rheumatology Dept. My personal experience....every MD thought I had Lyme Disease....fortunately the only MD who tested for LD(with the newest and most accurate test) within 2 hours of my home was a Rheumatologist.....She cleared me for LD and found I had APS...and several months later Unspecified Connective Tissue Disorder....She was looking and testing for markers for the entire autoimmune system....not narrowly focused on the blood or on another single system.....

[haley in reply to Hidden]

Are you in the states? Can you tell me who the rheumatologist was that you saw? My lab work just came back shedding no light, and not pointing to lupus. I got the usual, "come back to see me in 3 months, or come sooner, and we can discuss medication." I am not interested in taking medication (which will undoubtedly have it own side effects) when no one has a clue what is causing this. I guess I just go back to the APS diagnosis and treat symptoms if and when I want to even though he thinks that my symptoms are not APS despite the positive antibody tests. So here I have a doctor who believes the symptoms are real and wants to medicate me, but doesn't think they are APS symptoms. I feel like giving up.

[Hidden in reply to haley]

Yes I live 2 hours north of NYC....Hudson Valley...Dr. Andrea Gaito is

located in Basking Ridge New Jersey......where do you live.....?

[haley]

I live in western MA. She would obviously be out of network in terms of insurance. I really don't know what to do. If it wasn't for this website, I might just decide I was completely alone with these odd symptoms.