Intro to me... and a question about the right specialist

Hi, I'm new to the site and recently diagnosed. I'm still a little bewildered at the information I'm obtaining regarding the prognosis, but somewhat relieved to finally have a name for what is happening to me. As I learn more about APS and the factors used to diagnose me, I see things from my past start to make more sense. I'm fairly certain the genetic predisposition for this came from my grandmother. She died before my birth when my father was 14. She died of a rare blood disease that no one in the family could remember the name of. Science has come a long way since then and I'm thankful to have caught this on the first thrombotic event and within 6 months of very troubling symptoms. I look forward to reading others experiences and sharing my own. It's nice to have found this site and to have a chance to connect with other people who can give some experienced insight.

On to my question..... which type(s) of specialist's do you prefer seeing? At this time I'm under the care of a hematologist, but wondering if I should seek out a Rheumatologist as well. Your opinions are greatly appreciated.

22 Replies

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  • Hi there, and welcome. This is a great site and you will get loads of info on here. As to your question about specialists, if it is just Hughes you are diagnosed with it may be that you will only see a haemotologist. A lot of people with Hughes also have SLE as well as some others like Reynauds, Sjorgens etc. People with SLE usually do see a rheumy too. Talk to your GP, if they are good, they will decide which is best for you.

    Hope this helps

    Sue

  • Hi Sue, thanks for the quick response. I'm glad to know I'm in with the right Doc.

    :)

  • Hello there and welcome.. it would appear to most including myself that a rheumatologist or haemotologist is he best or sometimes on the odd occasion a neurologist.. I currently have a team which involves a rheumatologist; and a haematologist and also the GP, which is a good combination. Information is everything. If you can get the two to talk to each other... but make sure you employ a rheumatlogist who actually understands the disease! where are you located, that might indicate others on here as well as myself flagging up possible names! Mary F

  • Thanks Mary... I'm in the US.... Denver, CO to be exact.

  • Ok... do try, if you get no more information appearing under here, putting a new question on to find out who is in the USA.. as there are quite a few on here from the USA, so some good advice will come your way, Also this is a useful site.

    americanaps.org/

    and welcome again, by the way, plenty of support on here, and possible new friends and contacts in the USA Mary F

  • Thanks for the link Mary. I've done a lot of searching but never saw this site. :)

  • That is a pleasure, I have heard about them from a great deal of people both here and in the USA! Best wishes. Mary F x

  • hi maiden, i live in N.H. ,i have a nephew who lives in denver, he helps me with my computer , matter of fact he just built me a new one { horray } still trying to figure it out ??????????????i was dia. in aug, of 2009, it wasnt till nov, 2011 that i got to a rheaumy- then things started to happen , he found why i was still having so much trouble, he has sent me to a number of other doc s and ran many tests. i say get all info you can get ,take it with you . it helps them when you already know a lot to start so you can move on. 1 st appt. with rheaumy, i asked him what he knew, , then he asked me __ this was great as far as im concerned, i think thats why we get along so well . i have one of his best nurses now also, not that the others bad , Jill is more expierinced in aps, my s and c protein problems, la ,etc. you have to be very pro-active ,dealing with this dis-order. good luck , let us know how your progressing, welcome to our group !!!!!--------------------------------------------- jet

  • Thanks Jet! I agree about the proactive part. It's my being proactive that got me to this diagnosis. I've been poked, prodded, imaged, multiple ER visits and hospitalized more than once over the last 6 months with everything from heart rhythm problems with no explanation to thrombotic events & some pleurisy. It's been an absolute roller coaster ride. Hemo hasn't mentioned a Rhum visit yet but I'm thinking I need to find one. Two ANA's have come back a weak positive. I wonder if there's more to this than I know.... Right now I feel great, but for months I didn't. Thanks for the group welcome! Thanks for the smile.

  • Hi Maiden, I live in WV. I have found that (this is going to sound so strange!) that if your health insurer has a nurse consultant/case manager option that they can provide a lot of support and useful information. Hughes, (APLS) presents a scenario where your's and the insurance company's interests usually align: the best way to manage your chronic disease is also the cheapest way to manage your chronic disease. Consider: keeping a TIA, stroke, or heart attack from ever happening is waaay cheaper then cleaning up the damage if one of these occurs.

    Gina

  • Hi Gina....my thought exactly....I have an appointment w/ a Neurologist at

    The Columbia University Medical Center in NYC....I will be requesting a "transcranial doppler imaging scan".....and hope I will be approved....I am 63 and have never had a TIA but when I exercise and "build up a sweat" I feel dizzy / nausea....So although my MD says my tests for HD factors are normal at this time I want to make sure.....do you know anything about this scan?

  • Never even thought to use that service. Thanks for the advice! :)

  • Hi Maiden....Welcome...this site is sooo helpful....I live in NY and for many years was diagnosed w/Lyme disease....finally saw a RHeumatologist who tested me for Hughes.....eternally grateful to her....I too believe I inherited this disorder from my paternal grandmother.....in excellent health until she was 65 then had "a blood clot" in the brain....ended up w/ dementia...overall deterioration and died at 70.....She died when I was very young...but the family used to talk about her strange symptoms.

    I was diagnosed 2 years ago at age 61. Aspirin 320mg is my prescription and is keeping my APS in check...however I started not feeling well again and my MD tested for "inflamation" and also diagnosed me w/ unspecified Mixed Connective Disorder..

    I take Plaquenil for this and now feel great.....I have no other health problems....great good cholesterol levels (90)....good heart....etc etc....So I recommend a Rheumatologist....they understand Autoimmune Disorders....and my MD says if you have one AD chances are you are prone to getting another one....good luck

  • Thanks Luisa! I'm on the same does of asprin despite thrombotic event. I can't maintain therapeutic range on Warfarin. It's what got the blood tests rolling to see why. My paternal grandmother died in her 40's, at approximately two yrs. older than I am now. Everyone seems to know that it was from a "rare blood disease" yet no one can remember what it was called. My father was too young at the time to fully understand what happened. I too am having inflammation problems. I ended up in the ER with Pleurisy and no one could give an explanation. I keep testing weak positive on ANA's for mixed connective tissue yet hemo has not mentioned a Rheumatologist. I'm curious if the mixed connective tissue disorder has caused you any heart problems. I had a heart monitor, an event monitor, and a stress echo and got a fairly clean bill of health except for PVC's with no clear indication of what's caused them. I was hospitalized with an arrhythmia (again, no explanation to what caused it) which got me to a cardiologist. I've always been a very healthy person until last year. I'm astonished by the fact that this problem seems to correlate to autoimmune disorders. I have this by way of a genetic anomaly is all that I've been told so far. I'll be researching for a Rheum today. Thanks again!

  • Hi Maiden...from my experiences a Rheumatologist is the way to go

    I have found that MD's w/ specialties can have 'tunnel vision'...ie hematologist/blood disordes----infectious disease MD's/Lyme etc.

    My Rheumatologist seems to have a more 'Holistic'(over used term-but didn't know another) vision. I travel 2 hours every 90 days to see her for my tests....ANA is the marker she watches for inflammation....

    it was down to 80 3 months ago and when she tested last week it was up to 320....I had been feeling flu-like symptoms on and off for a month so I guess I am better able to discern mild changes.....I started taking Ibuprofen on my own (only thing that made me feel a little better....relieved low grade headache etc.)....and my MD said that it probably helps the inflammation and said I could continue to take it as needed........

  • Another thought....I trusted Dr. Gaito from the beginning because she has the approach that you start w/ the least invasive meds first....She started me w/ Aspirin for APS...and monitors to make sure it is doing the job......and prescribed Plaquenil --used for over 100 years for Malaria-- because it was the least invasive (my term) of the meds that suppress the immune system....researchers don't know why Plaquenil is effective but it does the job.....again...if it stopped working she has alot of newer and probably stronger meds in her tool box

  • and one more thought.....I work as a Licensed CLinical Social Worker

    and I am careful as to what Psychiatrist I refer my patients to....some. in my opinion, are more discriminating in how they prescribe medication.....and also I have a son w/ mental illness and have researched to find the MD's I can trust.....extensively

  • Thanks Luisa! I think the Rheumatologist is in order. Throughout this diary of symptoms I've been keeping, "flu-like" is more often than all the other weird ones I've been tracking. My body feels as if I've been run over and the body aches remind me of the flu. I've never had this explained to me by any of the docs I've seen so far. I'm suspecting by reading others experiences that I might have more than APLS going on.

  • Hi Maiden

    Welcome to the group i hope you get all the inofrmation and support you want and need..

    Regarding your question a rheumatologist or haemotologist is the best or sometimes a neurologist depending on your symptoms.. I have a rheumatologist; and a haematologist and also the GP, which is a good combination. I agree with Mary that Information is everything. and getting cross working between the docs and hospital this i find difficult but not everything is perfect.

    Hope to hear soon

    paddy

  • Thanks Paddy! :) Thank you all for making me feel so welcome! I'm glad to be here.

  • hi-V- my rheaumy has done fantastic with me, today i go to Dartmouth to see a endoctrinologist , then on thursday a surgeon ,also at Dartmouth. he has made mention of a hemo , but nothing yet ,maybe after these other appts.not a good week end for me leg pain ,sore stabbing pain in feet again, not much sleep going on with these pains,lite headed,dizzy. hope it passes soon its a hour and a half drive for me to get up in the hills to dartmouth!! Mary has a great point , dont be afraid to ask these doc s what they know about aps etc.when i called about the appt. for a surgeon, i didnt know any up there- so i asked the scheduling woman who in their line of doctors is knowledgeable and proficient with aps and my blood disorderes, and did they infact have my records ready . she said they did and in fact the doc is in the same section of the hospital as my rheaumy, so the new doc is real close . she will get anything she needs from my other doc Chou. this is the endoctrinologist. ill go up early and see the nurses in the surgeons office also . sorry for the scadder brain message ,having brain cramps today , my blood must be off?? i wont know that for at least 3 or 4 hours. bfn ----- jet

  • Thanks Jet, and no need to apologize. I totally understand the "brain cramps". It's been starting to impact me at work. It's a struggle some days. I hope the endocrinologist went well for you. I'm sorry about the leg pain. I've developed that problem as well. I've been imaged multiple times, mainly due to the swelling. A sensation I get sometimes is the lite headed, dizzy with a little room spin .. sometimes it feels like a mild earthquake under my feet as well. Good luck with the surgeon on Thursday and thanks again. :)

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