Doctor retiring ..now what???

[happee1]

my APS doctor is about to retire.. He wants me to have a nurologist to go to...I asked what other APS doctor is available and he doesn't believe anyone other than the nuro would have as much knowledge about the illness. I don't know what to do and i am feeling a bit scared...He is the leading doctor in my state so of course i have the utmost faith in him but....now what??..thanks for any advice you can give me...

[MaryF Administrator]

Hi, I can only suggest that you get information from other members on here in the USA, as often people can give you localized information, does the doctor themselves have any ideas regarding you you can go to re Hughes Syndrome/APS? I would pick their brains first. Also there are some names on here: apsaction.org/

MaryF

[CanaryDiamond10]

In the States, Rheumatologist's are at the forefront in management of an APS case. Autoimmune diseases of all kinds are the clientele of that specialty. That rheumatologist should be working with a TEAM of consultants such as hematologists, high risk maternal/fetal care. Whatever YOUR APS deems necessary. The rheumatologist is the one who gathers all the information from all the other doctors your disease demands and coordinates it, develops a plan of action and oversees the entire case. I would always recommend a teaching hospital.

Neurologists and Rheumatologists do not necessarily agree. You have to take the best of both. You'll find many people who can relate horror stories about neurologists making them feel like they are crazy, including myself. Like any other research.... you have to sift through it and see what you can agree and disagree with. They are the most likely doctors to have God complexes. It's true they do remarkable things, but it's God's hand that guides that surgeon's hand. I worked in neurology for a few years. I was able to witness many brain operations some 12 -15 hours long. Like I said, they do remarkable things where I can see how parents can wonder if they ARE Gods of a sort. To hear about it is one thing. To play with the patient every day and see the improvements is remarkable indeed.

Neurologists are just people like myself or you. They get up in the morning and just start putting one foot in front of the other.

Don't trip!

Warm wishes,

CanaryDiamond10

[GinaD]

Have you checked out the US Antiphospholipid support group? What state are you in?

[happee1 in reply to GinaD]

where can i find this??? CT

[GinaD in reply to happee1]

Apsfa.org. On the left you will see menu options which include"find a doctor." Good luck.

[Bonnie39]

After years of ill health a neurologist spotted evidence of a stroke (was hospitalised for it in 2005 but there was not a proper investigation or follow up) and many TIAs after an MRI to establish cause of extreme ear pain, now recognised as TMJ pain and also SLE related. He spoke to the haematology department who recommended bloods, which came back with +ve LA, APL, clotting abnormalities etc etc. Neurologist spoke again to haematologist and on their recommendation repeated bloods 12 weeks later which also confirmed earlier ones. He then referred me to a thrombotologist and she took a case and family history.

And hey presto! Aps confirmed and lifelong warfaron prescribed. I am very grateful to the neurologist. Now I need to get the SLE treated too. Plaquinel seemsto be a good additional drug for me. Good luck

[happee1]

thank you all for your answers..i appreciate the time you took to answer ..i am in CT

[GinaD]

CT. Well, we're both in for this next --last? ( I hope, I hope) blast of winter set to hit tomorrow.

I too had a positive experience with a neurologist. He suspected APlS long before my other docs did. I now am under the care of a rheumatologist and 2 hematologists (local, and the heme at Duke who was brought on board to help with the hip replacement surgery I had at Duke this past Nov.)

I'm sure there is an experienced specialist near you. Again. Good luck.

Gina in West Virginia