Hi ! i,m new here from Pennsylvania in the USA.

[dj-92457]

First after reading so many stories here my heart goes out to everyone with this terrible (autoimmune disease) APS ! I found out i,m not alone with this disease. I'm a 54 yr old male, yes i'm told its uncommon. I found out i had APS after i had a few TIA's and then 2 PE's in 2009. I have LA, Factor II Mutation and Raynauds. This year after even more eye problems i'm told i have rosacea. You don't know how much i HATE this disease ( well Yeah i think you all do ), the problems never seem to end, more pain in shoulders, neck, knee, fingers and now the last few months my feet and toes are numb, but at night they feel like there on fire, burning. But the worst is being soooooo TIRED all the time, noooo energy it's unbelievible. How do you go from a sports playing hard working in shape person, i pitched modified fast pitch softball for 32 yrs, i can't do anything anymore, and in 2011 my employer of 12 yrs who don't honor Dr's excuses and you all know there are many Dr visits, so they held them against me, then basicly fired me with no reason given, my guess is age,medical ins. usage. Sorry for going on and on. Thanks....and take care....Don

[Suzypawz]

Hi so glad you have found us, I'm sorry you have been diagnosed with APS plus the others you have mentioned.

It is unbelievable how you have been treated by your employers with this!!! it is maddening!............

Yes I think you will see how much so many of us will understand what you are going through & understand your symptoms as most of us will too be getting them.........

a lot of us have had to change our life styles wether we liked it or not it's not fair at all....& I think we all struggle.......... but what I have learned from these sites is that we are a good bunch that will still love a good laugh....even with our problems

No need to say sorry....that is what we are here for.....each other

Cant wait to hear more about you, Sue

[Hidden]

Hi Don,

Yes I do know how you feel (and of course everyone here will know how you feel), I was first diagnosed with APS in 2007, however I did have a positive Lupus Anticoagulant in 1999 and numerous TIA's, migraine. The Lupus Anticoagulant remained positive for the next 8 years, I even had a stroke but was just given aspirin alone and never diagnosed with APS.

I lived a very active life before my body really suffered, I was a boxing, jogging, lifting light weights, working out in the gym 3 - 4 times a week, rock climbing - one morning changed all of that! I thought I was having a heart attack, I thought I was going to die, it really felt like that - well I had a massive PE, I still could have died but luck was on my side and I lived. I didn't think I could have had a PE on warfarin/coumadin, especially if I was in my therapeutic range - but I did! It didn't end there, eventually the PE's kept recurring, multiple ones. My life - the old one had disappeared - I can only walk around my house, my last PE was 2 months ago.

Sometimes I look back and I think where the heck did that person go? My youngest son hates APS probably more than I do because he says I can't do anything with him like I used to, we used to run together.

I just try to find different things to do with him, I live in the moment and make every moment count...

What I have found most with APS is that your life seems to constantly change in one way or another, you can go to bed and wake up and things can be totally different...so I tend to have the attitude of "Expect the unexpected"

I try never to look back very often...and I try never to look to far ahead...I try and vent as much as my support people can handle, and laugh as much as I can, there are times I cry but to often...

Take care,

Lisa Marie

[jessielou]

Hi Don

Welcome and glad you found us! Sorry to hear you had such a tough time with your health and employer, so out of order!

We all understand and feel your frustration, Aps certainly changes everything, I've always been active, used to do long distance running, chase my kids, run a busy pub etc. etc.

I hate the limitations Aps imposes, but make the best of every thing, everyday!

Keep fighting, keep smiling!!

Check out employment law, maybe something can be done about your ex-employers discriminatory behaviour!

Hope you feeling ok today.

Take care gentle hugs love Sheena xxxx

[MaryF Administrator]

Hi there, and join the club etc. There are quite a few guys on here, who you will get to know, and in general the peer advise between us all in terms of medicaton, tips etc and also who see which doctor in the USA, will be really useful to you. Best wishes. MaryF x

[3boys]

Hi Don,

Welcome. I am from Wisconsin. I was dx 13 yrs ago after my m/c's. Sorry about the troubles you have been having. The pain is the worst. The weather has been horrid 100 degrees plus humidity really stinks. I just found this board a few weeks ago. Hoping you feel better!

Amy

[MrBigDog]

Hey Don,

Welcome to the group. Sorry to hear you're feeling so bad, it seems that is all to familiar for most of us. I live in Kentucky, and like you am one of the uncommon male sufferers of this "Condition", I also know what it's like to loose your job because of it. I had been off on FMLA, (Family Medical Leave Act), for a year when my employer informed me that they no longer had a position for me. It was their lack of a "Light Duty" position that put me off in the first place, but I figured that, like you, (I'm 51), age and the cost to keep me on was too much...Have you looked into unemployment benefits, or even social security disability? It's something to think about.

Take care,

Jamie

[dj-92457]

Thanks for the welcome, Suzy, Lisa Marie, Lynn13, Jessielou, Mary F, 3boys and Mr BigDog. I have been looking on this site for a couple months, i try to find everything i can about APS. I am on unemployment right now and so will be looking into disability , I don't know if i could get it or not. ( i sure see NO one will hire me now though ) As for my job there are NO laws they can fire you in the US for any reason, they don't have to have one, NO job protection here, only maybe if your a union work, even they are getting weaker! My doctors have been pretty good ( even though i have'nt gone to my GP in over 2 yrs) lol They want my INR range at 2.5 - 3.0 I struggled for awhile but it's getting better now, I alternate 4mg and 5mg day to day. If my INR stays in my range i only have to get blood work once a month, if it goes to high or low i have to go every other week. I see on here people get that brain fog, so do i , i can be filling out a check and forget how to write certin letters in my own name,, goofy i know and i forget peoples names big time, even if i've known them for a long time. Take care ..Don

[jessielou]

Hi Don

I'm so glad your inr is behaving and staying in range, the brain fog is great isn't it, forgetting names and numbers I'm terrible with. Scrambling words too, have some laughs with family and friends, is a good laugh when suzypawz and I get together, end up in stitches trying to figure out what the heck we're talking about!

There are quite a few members in the USA on here, hope they all get in touch!!

Being goofy is great, isn't it!! You're in good company here!

Take care gentle hugs love Sheena xxxx

[agardneralg]

I am also from PA. My sister was just diagnosed with "sticky blood" this week after 5 yrs of illness most recently having a debilitating stroke at the ripe old age of 40. I was diagnosed with MS in 2005 and plan to be tested as well for APS. We are from north central PA with basic rural healthcare only here. Do u know of any good doctors who have knowledge of APS???

[Standingtall]

Hi I'm 52 years old from Buffalo NY andwas recently diagonosed with APS . I developed clots in my leg in March. However, after 8 weeks of keeping an INR between 2-3 I clotted again and this time the lovely finger pokes proved ineffective and my INR in a vein draw showed a 1.9 on a Friday and the following Friday a 1.5. After 7 days in a hosptial, I was told that I had vascular damage to the interior of my veins and that they no longer will stay open on their own and I have to use verapamil up to 6 times a day to keep the veins open (as they cry out with a twitch or cramp feeling from your toes to your head). I found an immunologist that seems to be the only Dr in the area that knew how to treat APS. Which was obvious that my GP and Rhumatologits and Hemaologist all kept my INR too low and were ignorant to this disease. I've been told an APS patient needs an INR between 3-4. Too late for me now...damage has been done, but hopefully I can educate someone else from my bad expereience.

Has anyone suffered from vasculosopy? I get extremly bad headaches , and nights are the worst with tingling and what seem like attacks on veins throughout the body. I too was very athletic and miss my mountain biking, running and hiking. A big work out today is walking around the block. I now take lovenox injections twice a day ....Dr said we can't trust the coumadin, so lovenox will assure me no sticky blood, but if I don't open a vein fast enough with meds, I hold the blood back and then when I do grab for the med and open a vein, I risk throwing a clog. I'm happy I found this site....I feel alone and I'm trying hard not to let this disease define who I am and to keep an positive outlook, but there are days I wonder if I'll ever see the next day. God has a plan...I just have to trust it.

[Calico]

Hi Don,

I'm from Pittsburgh and diagnosed with primary APS but as of yet no relief from symptoms. Still searching for best complement of doctors. It's been a very frustrating journey. Pittsburgh is supposed to have pretty good medical care with UPMC but I'm not sure my doctors are strong with Aps.

Sorry to hear of your challenges - hang in there. Better days ahead.