I was diagnosed with APS and then they changed their minds... so I am seeking a specialist now. I have had symptoms for so long, that I am dubious of the reversal of opinion. Plus my old coag studies (5 years ago) were clearly abnormal.

But out of what you mentioned, apart from the swelling, I do have harder areas of the thigh, like a deep stripe,, thicker above the knee and also thick lumpy patches throughout both legs. Just the left is worse. My neuro said it is likely the vein ladder that is doing it. Not sure what that means either. lol. But the thicker areas that I feel are subtle. No one else would notice them. But some are visible.

My spots are pencil point sized.. def not 1cm.

All I do know is the ER doctor was looking for them, or at them. Not sure which, and again that was the first day I was diagnosed.

Sorry you message got cut off Stefan! My site crashes a lot lately!!! And I can't get back on for hours at a time!!

This is strange...I have real problems writing this sentence!!!...perhaps the homepage does not like what aI write :) or I was simply to tired when I wrote this late evening (where Im from). Here I try for the third round

"Some patients with APS develop spots of varying sizes, but these can be classified according to their size as petechias (less than 3 mm in diameter), purpura (3-10 mm in diameter) and ecchymoses that are larger than 10 mm. "

So your spots are then probably of the size of petechias. What is causing them is impossible to say, but hopefully you doctor can answer that. Perhaps it would be a good idea to see a dermatologist to find out cause for these spots...

If you do not have APS, then there is some other cause for your spots. Apparently, APS can be very difficult to identify.

With respect to this thickened area on the thigh, Im not sure what it can be, and I have no idea either what is meant with "vein ladder". Can these be varicose veins? or lipomas? Actually, both suggrestions do not really fit your description.

Good luck at the doctor.....

Petechias is seen on the skin, but it's not really a skin issue, technically so not sure a dermatologist would be necessary.

It's likely something you can address with whatever doctor you plan on seeing. There are many reasons for it, and some are serious but probably unlikely, but most appear to be rather benign: Here's a reputable link regarding petechia:

http://www.mayoclinic.org/symptoms/petechiae/basics/causes/sym-20050724

I am going to be honest here chipsanddip: Take a step back for a minute and SLOW DOWN. Find a good doctor, one for now. And let that doctor assess you and help you find specialists if you need them, in your area. This bringing all these specialist in at once may not be necessary. The goal is to find someone to manage your overall care. Chasing down doctors on your own or thinking every issue requires a specialist is exhausting and may cause you not only unnecessary expenses, but also unnecessary stress.

Mostly I'm asking questions as they cross my mind here, I am not obsessing about each thing but my issue is the overall problem and being undiagnosed historically for many years at a time. I am not going to wait for an APS diagnosis IF that is what it is. But I do want answers. I have been sick enough, long enough, to know that getting something diagnosed can be a nightmare. WHich is why I am going to pay to go back to my old docs who were brilliant. This hematologist tells me nothing and is rude anyhow, so after the 6th, I will switch or not go altogether. I don't know if I will need one, but my questions remain.

I have not been blessed with good health, and because my history is complicated I run into this problem all the time. Which is why I am frustrated with the process here, in a new State with people I don't know.

But mostly I think it's good to hear what everyone else here has gone thru or experienced. It makes my knowledge on the matter a little more well rounded. I am still absorbing though.

I have no one here on the case except the hematologist. (I did spend money to see the one from the hospital though since she was the one who dx me APS initially) I have the neuro down here who is extremely busy but we talk about my other issues. And the gyn/onc. The primary docs turns out, really don't do anything or diagnose anything. I am still trying to figure this out. It is completely different in NY. Mom and her husband are with me, and we are all trying to understand what, if anything, our primary's are doing.

And very sadly, due to experience, I do not trust most doctors or their opinions. I say this because I have had too many ill-informed, and narrow viewed docs lead me down some dangerous paths. So, I have to make sure I feel comfortable with who is giving me the guidance. Again, I have too many conditions to deal with so I need to know that I am in the right hands. Since the clots could tie into my history, the only comfort I have is knowing that now I can reach out to my old team and get them in on it. Anyhow, it's complicated. I am disabled, and in a new State and not feeling safe at all, thus far. :( Which sucks.

And oh my God.... my mom just had a pacemaker put in, he started cutting her while she was awake!!! AND he put in the wrong one! And this guy is supposed to be a real whiz. Everyone recommended him. So, yea, I trust no one. lol.

About the petechae, I was just curious if you guys got them too and what they were. Not a big deal. I will try to remember to show the doc on the 6th, lol, but I always forget stuff. But if he rushes out again I won't ask... I'll see how it goes.

Stefan, yes, APS needs a specialist to diagnose. It is tricky to get it figured out. I may have an answer on that in a couple weeks hopefully. :)

Any, that;s my story! lol. You guys rock and have so much info... so i am learning a lot! I just like a little chat sometimes too ;)

Thanks again:)
xoxoxoxox

I get wanting to figure it out and the mistrust. I have a chronic disease and so I understand dealing with different things going on at the same time. It can be frustrating and overwhelming, especially if you have some knucklehead docs. The pieces will start to fall in place and things will come together.

Yea, I sure hope so :)

Stefan, I apologize that you took pieces of what I said to be a criticism of you and you took offense. That wasn't how I intended it to be taken. I think it's very nice of you to be willing to look at someone else's report and try to interpret it for them. I barely want to try to figure out my own reports, much less pore over someone else's. I only used the example of something you did say you didn't understand in the report but were still attempting to figure out and make it fit into the rest of what you were interpreting to show how it can really just be a giant misuse of time and energy for us to try to figure it out for ourselves. Chipsanddip has another appointment coming up, albeit with a doctor she doesn't care much for, but in any case, it just makes more sense that she ask him whatever parts of the report which she wants to understand better. I took my report to my doctors, and I showed them the parts I didn't understand and had them explain it to me.

Part of dealing with ongoing and/or chronic illness is learning how to be a good patient as well as finding a doctor who we can work with. That can mean first off, not going in with preconceived ideas as to what you problems are unless you have a definite diagnosis which you can reference, because doctors don't like being told how to do their work. What I have found does work better is lots of intelligent and well-thought-out questions. Make a list if you need to. For instance, "What is your viewpoint on APS? One doctor told me I had it, but then later I was told I didn't, so what are your conclusions as a blood specialist and why, or does this need further investigation?" That, as opposed to, "I believe I have APS because one time a doctor said I had it, even though I've most recently been told I don't, but I still think I have it anyway no matter what anyone says." Even if you don't present the latter in exactly those words, that may be how a doctor hears it, and therefore it shuts down any productive conversation, because you've shown that basically their conclusions don't really matter to you, you're going to continue believing what you believe.

I think hematologists may be some of the harder doctors to deal with, honestly. Mine was exceedingly odd and not a little macabre. He told me pregnancy was a terrible disease, I'm not kidding! But I think bearing in mind that often hematologists have the complicated work of treating primarily with cancer patients, it might put into perspective why the can come off as not having a fantastic bedside manner. I was humbled just hearing the office staff of my hematologist's office dealing with the other patients, and as important as my issues are to me, I do recognize that it's not in the same realm as people who are quite literally at the very end of their life, and this doctor is doing his best to keep them simultaneously alive and as comfortable as possible. I mean, my blood clotting problems do seem rather insignificant in comparison, although when I was well prepared for the appointment, the doctor did give me the attention I needed, and even thanked me for having educated myself and asking thoughtful and reasonable questions, which he was able to address in a satisfactory way.

Since you have made the decision to consult with your previous doctors, then perhaps you can best spend the interim by educating yourself with information from respected sources, but I think rmb's advice is really good, to step away from it a bit emotionally. If your next step is simply to consult with those doctors, then maybe just focus on that next step for the moment, rather than stressing out about the whole situation of needing to find these different doctors. I have had continuing health difficulties since my PE, but figuring all of that out started with getting a good GP, and I have viewed him as kind of my partner in trying to figure everything out. To me, he's kind of like the orchestra conductor, he looks at what symptoms and problems I'm experiencing and decides which parts need attention and when, sends me to the appropriate specialist to tend to it. This has worked very well for me, but everything does hinge on finding a good GP. The trust doesn't come automatically, but it can build over time, just find someone who you feel like you can work with. Until you have that, you'll likely continue having difficulty getting good treatment.

Anyway, that's just my two cents, what has worked for me as I've navigated my problems, which weren't easy to figure out either. I hope some of the suggestion might be useful for you, and I hope you will find a good doctor soon.

I think you're right about the hematologists. Funny, my hematologist happened to me the father of a woman I sit across from at work. That wasn't planned. He was referred to me by my primary care doc at the time.

So I told my coworker, guess what? Your dad is my doctor. She asked me what he's like at work. I said he was kind to me. She looked puzzled because apparently he's gloomy at home. I said I'm sure it's because he treats cancer patients all day long but I bet he's very good to his patients, based on my experience.

He was a little odd, but so compassionate towards me; I was a two time clotter with no specific cause and I was just so anxious and out of my mind needing to know WHY I clotted again. I cried in his office, overwhelmed with this thing hanging over my head and no answers. I pulled myself together, apologized for crying and thanked him for listening to me. And he said, "sometime listening is all I can do for my patients." I'll tell you what, him saying that , and my sudden reality check about the types of patients in his waiting room, what they are dealing with, as I sit there crying like an ass because I clotted twice...well, lets just say I never ever once after that bemoaned my situation or ever again said I need to know why. What I needed to do was quit acting like a helpless sick person and just get on with it. So that was a very important experience for me to have. Honestly, I really never looked back after that. It was quite liberating really.

I think it's easy to forget our lives still have to go on. We have people to care for who deserve our attention and our presence, whether we have health issues going on or not. I wish I'd have put more time into that than fretting over what was wrong with me back then. I think for a solid 6 months, all I seemed to talk about with my husband was my health, what appointments I had, what tests I needed, what doctors I should see, how I had chest pain all the time, or my leg hurt, or whatever else I was hyper focused on during that period. I regret wasting that energy and not being a particularly good mate during that time.

I will try to approach him differently on the 6th, but I probably just won't speak this time.. it will be easier. I have lost my gifts of patience and diplomacy! When I first met him, he said he would review all my records and let me know about the APS. So at my next appt I was very eager to find out what my dx was. I naively asked him what he thought, and he went into a tizzy and said 'how could I know? You are still on xarelto... we will test you in 6 months off the anticoags' and he stormed out of the room. lol. So, this time I will just bring my new reports and keep my mouth shut, only asking about the dvt. He didn't remember what he had told me at our first meeting, which is fine, but the flip out was a little much.

Anyhow, I am not really losing sleep over this... this is the first time I have had time to think about my own health since the clots happened. I think I only started posting here a few weeks ago. My mom got sick a couple weeks after me, so I was busy taking her to the ER, hospital and caring for her husband who has dementia. So, now I am dealing with my stuff so I can get it all done and over with and move on. Like I mentioned, I am not going to wait around on this. I want it semi-resolved quickly so i can think about the beach and other nice things. :)

I am not sure about my primary doc too... he doesn't even want my records. I find it very odd. But the staff is very nice and professional, so that is a big plus. But it is more work for me to remember things to tell him if I see him. And I forget things. So, we will see how it goes with him. I keep bringing my records and he says he doesn't need them. lol. I need someone to orchestrate, but so far, that has not happened because of the clots. That part is already covered. But I do need someone who is familiar with my other conditions and to help me at this point keep things organized. Again, it is very diff here and not what I am used to. So that is throwing me off.

I'm not really seeking out diff specialists.. I am going back to (calling) my old brilliant internist in nyc and the neuro who i had wanted to speak to years ago but couldn't afford. She is the specialist who knows exactly about the autonomic dysfunction that I have, the seizures, etc and aps.

Anyhow, I just keeping asking questions because i have never asked anyone before now. And I am curious about everyone's varying experiences. I am so glad I am on the clot end too, and not the cancer end. But I am overwhelmed, I think justly, with the hysterectomy coming up and the stress of all of us at home having been ill and lack of funds. I will be very glad when this period passes.

Shilo I don't think I will ask him about his opinion on the APS again. I will let it be. If he says something, ok, but I don't think he will. Its too bad that you guys have had weird experiences with the hematologists as well. The hema I met at the hospital was very sweet and lovely. But she is out of network. I would have used her. I know I could have tossed around idea's and discussed things with her openly, so that is disappointing that I can't. I don't think she would have been opposed to hearing what the neuro thinks. She was very cool.

But I can appreciate the fact that they don't have a very nice job. I was puzzled initially, that they deal with cancer and clots. I would have thought it would have been different specialties. You sit in the office and worry about everyone in the waiting room and wonder who has cancer, and what they are dealing with. I wish it was a diff type of doc or a diff category.

Pregnancy is a terrible disease?? lolol omg that is so funny! But why?? In what sense?

rmb I agree that we just need someone to listen most of the time. A little compassion goes a long way. Do you still have the same doc? And I'm sure you were a great mate, even when you were stressed out. I think it's only normal considering what you had been through. And if he got ill you would have been there to listen to his fears and concerns as well. That is why we partner up! To lean on the other when we need to! That's the problem... I am single!!! lol

Anyhow, I just want to plow thru this and be done with it and not need any doc appts for many months. Or years if at all possible! I had been in Greece for 3.5 years and did minimal stuff/exams, and then came back here and got hit with everything. I am used to being sick and having limited energy to do things.. and that part is as ok as it can be. I have accepted that now. But, I want to be done with this stuff. The move alone was very hard on me, and coming back to nothing financially. But I know the bad patch is ending... I just prefer it be sooner than later... and I wouldn't mind a little lottery win on the side;)

Time for some tv now! lol.. I hope something good is on!!
Thanks everyone and have a great evening!

No movies:(