Specialists in U.S.

[jcgc]

Is there a list someone can point me to? If not, can you recommend someone in Southern California or Phoenix, AZ?

[KellyInTexas Administrator]

Daniel Wallace- Rheumatoligist in California

Or, Mayo in Arizona. ( Scottsdale. )

[jcgc in reply to KellyInTexas]

Thanks for the info. I had been using a hematologist at the Mayo in Scottsdale since 2013 and based on what I'm reading here I'm not sure I'm getting the evaluation I need.

[KellyInTexas Administrator in reply to jcgc]

Good to know... I started at the MAYO in Scottsdale in 2012. ( dec 2011 maybe.) before they knew it was APS. My docs in San Antonio knew it was auto immune- just didn’t know which one specifically. I was going into organ dysfunction and failures/ infections and RF shot up to 512. My surgeon sent me urgently to mayo there.

I started with Larry Bergstrom. ( integrative medicine.) He got a team together. I was sent to Brent Goodman in neurology. He tested me for autonomic dysfunction. It was negative. Tilt table test. It’s now positive. (What he missed was seizures. ) I was also sent to Rheumatoligist there. An Asian fellow.

He felt it would lead to scleroderma. What he did say was in my mid to late 40’s it might “rush in like the March wind” and suddenly differentiate. Yes- it did. November 2016 I was diagnosed. Large DVT.

But there was enough evidence (?red flags) to very clearly screen me for APS at the time I was at Mayo.

Also, when I was diagnosed, I called Larry Bergstroms office- I wanted to very nicely let his nurse know what diagnosis was. Did I need to be seen again? A follow through? I would be happy to do so. Was he familiar with catching APS with gastro paresis as a leading presenting symptom? ( several surgeries?) “ let’s educate together! Partners all the way!” Was my cheerful attitude. I told nurse about the charity... would they like to know about it? Yes! The nurse was very please and thought yes! Sounds fantastic! She was going to tell dr Larry and get back with me right away.

She said she was certain he would call me with the day.

Never ever called me.

[MaryF Administrator]

As suggested, it is the list carried on our charity website, also local knowledge from others. I hope you manage to get an appointment as soon as possible, let us know how it goes. MaryF

[JessicAZ]

Following! Still struggling to find a doc who knows boo about APS around AZ. Mayo in Scottsdale turned me down (said no docs treat it). I also reached out to the APS foundation and they shrugged. My primary doctor said "all rheumatologists are well versed in it now". Um no, they are most certainly not. Scary to be without a doctor who understands the disease.

[Wittycjt in reply to JessicAZ]

I also am in the US, I find you are better with hematologist here: forget our rheumies, neurologists they seem to be bewildered- just my opinion...

[jcgc in reply to Wittycjt]

I've been using a hematologist at the Mayo Clinic since 2013. I saw him after repeated episodes of superficial clots in my legs. They tested me for everything under the sun and according to their tests I scored just a bit higher than zero for Phospholipid tests but below the level that would result in a diagnosis of APS. As a result, they did nothing in terms of treatment other than to suggest I keep taking an 81mg aspirin which I did.

Just over a year later I ended up in an ER with DVTs in both legs and multiple PE at which point I was prescribed Xarelto. That was switched to Eliquis about a year later. To my knowledge, I have not had a recurrent clot.

However, historically I have had just below normal platelet counts. Years ago when donating blood they commented that it was slowly filling up the bag and asked if I was drinking enough water, perhaps there is no connection and I just needed to drink more. In recent years I have developed bouts of extreme fatigue that come on suddenly and include a sense of mental fog. For many years I have experienced episodes of balance problems. I don't know that any of that is connected to APS.

As it stands according to my hematologist I don't have APS. I am to take Eliquis the rest of my life because of the damage to the veins in my leg from the DVT and he says that a score of anything more than zero on the phospholipid test isn't normal so that is another reason to continue the Eliquis.

I note that one of the docs listed as Medical Advisors on ghic is Dr. Wallace who is a rheumatologist in LA and I will likely give him a try.

[Fairy-dust in reply to jcgc]

Hopefully I can help. I had an emergency episode of blood clots everywhere in my body, including both lungs. I was told that I was lucky to be alive, and would be on Warfarin the rest of my life. This was in 2009. I have experienced brain fog, balance and fatigue. Also was diagnosed with Fibromyalgia last year. I have arthritis and now,an aneurism. My legs hurt 24/7 and am on medication. So, one can be born with APS or acquire it. I am sorry to hear of your troubles.

[Wittycjt]

Please refer to “ Prof Graham Hughes Monthly Blog- January/February 2017” what the patient is teaching us regarding borderline aPL tests. Have a read.

[jcgc in reply to Wittycjt]

Is this the one you are referring to? I don't see anything for January just February. ghic.world/self-help/blog/f...

[Wittycjt in reply to jcgc]

Yes, did you read #6 in the blog?

[jcgc in reply to Wittycjt]

Yes, I did. Thanks

[JessicAZ]

Yes - may have to go that route. I have a newborn at home (preemie born at 29 weeks) and am an exclusive pumper so travel is challenging right now.

[Wittycjt in reply to JessicAZ]

Dr Elisa Bomgaars, Glendale, Arizona 480 582-0735, good luck