good evening all

[packerfan]

no longer seeing any doctors for my aps., dizziness. no one is willing to try anything to stop or slow it, so i see no reason to see them anymore. it is unfortunate that the doc's here in the U.S. know so little about aps.

I am more at ease now, still take fragmin but my abdomen is black and blue and full of nodules. i am learning to deal with my fate from this aps. pain medication seams to help . still fall and feel like i am going to pass out. 15 medications and two shots a day is to much and i think that is what the problem is.

I am cutting back on my own except the pain meds

[MaryF Administrator]

Hi, I am sorry things are difficult but I do suggest seeing your main doctor before cutting down on any anticoagulation as this may be dangerous for you. Would it be worth trying to travel further away for more expertise, I know this is a problem but I know others members in the USA have done this. It might be a good idea to do a new post reminding people of your current geographical area. Please make sure if you do any more rounds of blood tests that they look at your D, B12 and Iron alongside a thyroid panel to make sure none of that is making things any worse for you. MaryF

[zzcat]

I completely agree with Mary. I have had to travel quite a few times, at my doctors urging I might say. He sent me for a second opinion to Johns Hopkins and now that is my place of choice. They are excellent with all things autoimmune. Also, there is a specialist in NYC, at Mt. Sinai that only does APS. I can dig up her name at my desk once the sun comes up.

But yes, you can't settle, it took me going through about 6 or so rheumatologists before I found an excellent one and have never looked back. This is not an easy journey but doing nothing is not an option! Good luck.

[Debbweb01 in reply to zzcat]

Omg her name is Caroline Something my sister found it on this site and we can't find it again! Please send to me from Mt. SINAI? I will b forever in ur debt!

[zzcat in reply to Debbweb01]

Hello Deb,

I too wrote it down as I live in Florida but use Johns Hopkins as my second for everything.

The name is: Dr Caroline Cromwell

NYC. 212-604-6057

I understand she specializes in APLS, but please know Johns Hopkins is fantastic too for that if your sister does not get results.

Good luck!

Susan

[Debbweb01 in reply to zzcat]

Hi Cat! Thank You sooooooo very much for that number for Dr. Caroline Cromwell in NYC! I called yesterday & got an appointment for We'd Dec 16th. She does APS patients every Wednesday I think! She's also associated with Beth Israel in NYC. Oh by the way it's me who has APS! My sister Lynn joined this site to understand my disorder! Plus to see if she shud be tested too! I'm trying to convince her to get tested! I'm so very greatful to you for getting me that phone number! I heard also that Hospital for Special Surgery in NYC also has whole unit just for APS, I can always use that as a backup, but wen I heard of Dr. Cromwell name and Mt. Sinai, I got a good feeling! I live on Long Island, NY. It shud take about an hour to get there with the Railroad and a 20 or 30 min Subway ride and a short walk I think! I must call my sisters hubby to get exact route! Since I lost my leg last January, everything takes longer! I must get there at 10:30 for registration and 11am I see her! It sounds like they have an organized office! I've called my docs office and since I've been going there for over 10years with my other rare blood disorder cald PV/Polycythemia Vera, they will have my records ready on Tuesday for me to pik up! I'm nervous, but happy and excited I found a doctor that specializes in this awful disorder we have! Thank you again and I shall keep in touch! Godspeed!!!

[Robertsmom in reply to Debbweb01]

Hi there just was wondering how your experience was with this dr. Thank you!

[Wittycjt in reply to Robertsmom]

Debbweb01 the above is a question/response is for you

[DannyBoy1]

I wish my Docs had been this detailed with instructions the times I've had to self inject! I'm on Coumadin now but if they plan any medical procedures that have the potential for bleeding, they take me off the tablets and ease me back on to them with injections for a while. Thanks.

[shardavis3]

When I have to be off coumadin for procedures coumadin clinic puts me on daily injections. The bruising was bad but there are big lumps all over at injection sites. They hurt. Is this normal?

[Lure2 in reply to shardavis3]

Hi there,

Please put a new, own question on here and I am sure you will get more answers.

Best wishes from Kerstin in Stockholm

[Debbweb01]

I'm in NY! Where do u live my dear! Yes we get no help and I will go to NYC after holidays! I'm in pain and painkillers just don't help! I wonder why? If they help u Why not me? Confused now! I wish u well my friend!

[mylafont]

It is suspected a clot caused me to have seizures. I was put on Topamax to prevent future seizures from clot scaring/damage. The Topamax has greatly reduced many APS and migraine complex symptoms I had been having including the dizziness. I can't say this would be your remedy, but you need to find a doctor who will work with you to find out what is going on with you. In this particular situation with me, I was sent home with an EEG monitor for a few days, which prompted hospital monitoring for a week. The end result was the Topamax being added to my medication regimen, with me going from having some kind of episode or symptom a few times per day to maybe once every other week or so.