Introduction and a query

[JossMiller]

I received an APS diagnosis early this morning. It caught me completely off guard. I spent a good bit of time today doing the google research thing. I'm more confused than ever.

I have bilateral Meniere's disease. I've already had the left inner ear chemically removed and the right ear is deteriorating. That caused me to ask my PCP for an ENT referral. The ENT did an ANA and it came back 1:1280 and I was referred to a rheumatologist who made the diagnosis, added Plaquenil to my extensive list of medications and referred me to a hematologist.

What I don't know is what to expect from the hematologist. I've been on a high dose (975mg/day) aspirin regimen for over 10 years after a 3 year battle with a fussy left anterior descending artery culminating in a minimally invasive direct coronary artery bypass. The initial stent placement kept closing off. After 7 procedures to try to keep it open, they did the bypass at age 50. Now I wonder if it was APS related.

Can you tell me what's coming next at the hematologists?

[Manofmendip]

Hello and welcome to our friendly forum.

It is good that you have a diagnosis of APS, as many struggle with illness for years before they get correctly diagnosed.

May I ask you where you are from, as this will help us on here to help you.

Best wishes.

Dave

[JossMiller in reply to Manofmendip]

I live in a small town in Pennsylvania, USA, near Pittsburgh. I have really good doctors all around me.

Thanks for the reply.

Glenn

[Manofmendip in reply to JossMiller]

I'm sure you will get lots of replies.

[MaryF Administrator in reply to JossMiller]

Hello, it is crucial that you have a specialist who fully understands the condition, here is a charity with a list with some members in the USA: apsaction.com/

MaryF

[JossMiller in reply to MaryF]

Hi, Mary.

I noticed doing research that the UK and EU have a lot more information available when referencing "Hughes Syndrome" than USA sites. And there looks to be more research going on there as well.

Thanks for the link. It's already provided information that was useful.

Regards

[MaryF Administrator in reply to JossMiller]

Thank you for the feedback, as administrators we are really pleased that either out on here or by private message both from patients and some medical professionals, that what we do is appreciated as of course we have the condition ourselves. I will always support any venture which enriches either the patient experience, diagnosis or outcome or spreads the word effectively. Best wishes to you. We receive a lot of feedback on an almost daily basis and it is nice to hear it. MaryF

[Lure2]

Hi Joss,

I just want to say welcome to this site for APS where we all try to help eachother with our own stories as we are in the same boat. We learn a lot from eachother.

I live in Stockholm. I am sure you will get answers from others in the US and people with the same symptoms. It is very important to have an Expert on this illness who knows what to look for re all the different symptoms we may have from different organs.

Hope you will stay with us here for a while.

Best wishes from Kerstin in Stockholm

[Debbweb01]

Hello Pennsylvania I'm Deb from USA, New York! I was diagnosed in October of 2015 and still working on getting my healt in order! I had coranary bypass at age 46 but wasn't DX'd yet with APS! I lost my left leg due to blood clots in Jan 2015! Then DX'd with APS! This forum you r on is excellent! They've helped me to get the best medical care I can get! You r very lucky to have great doctors around you to help u get better! How is your hearing with the nineties disease! I was DX'd with that a long time ago! It went away after a while! I had vertigo with it too, but must be quiet on that cuz it's quiet on me and don't want it to awaken!!! Lol... Good luck and keep with us!!! Godspeed

[JossMiller in reply to Debbweb01]

Sorry to hear of your troubles. How awful. Hope you stay healthy from here on out.

They deafened me in my left ear. Right ear still has some function. I had to learn to walk again. I'm still wobbly since I only have one faulty gyro in my head. I've broken my left wrist. Ribs. Tore the right rotator cuff and had to have that surgically repaired. Snapped the left humerus into three pieces. I keep ultra dehydrated to control the vertigo.

New York City or State?

[Debbweb01]

Oh dear! I pray u get healthy fast! Is ur blood at a good anticoagulant ef rate! They say this help APS/Hughes sufferers a lot! I hope u have good doctors too!!! I live close to NYC! Long Island, NY! I use to spend my summers in Picono area! Lake Walenpaupack area! Loved it! Miss Pennsylvania! Been years now! My son passed away and we never really went back after his passing! Too difficult! I hope u stop falling and maybe get help! You did say u had great medical treatment? That's awesome cuz it's our battle with APS TOget doctors to accept and understand us! Stay on this forum and u will get great help and supportive responses with everything! They've helped me enormously! Godspeed! Please stay well!!!

[Holley]

Welcome! I'm in Washington DC and was diagnosed in 2005 after a complication with open heart surgery. The heart surgeon could not confirm whether my heart valve deterioration was from my APS or from the chronic strep throat I had as a child. There are definitely connections between APS and heart ailments. I've been followed since 2005 by a hematologist for my APS. I imagine the hematologist may re-evaluate your anti-coagulation protocol. Do you have your appointment scheduled?

Autoimmune diseases run throughout my family. My cousin has Meniere's so I'm a little familiar with that. Do you have family members with other autoimmune diseases?

Lisa

[JossMiller in reply to Holley]

Hi, Holley.

That's interesting. The source of my Meniere's was strep throat that worked its way into my ears. Hmmm.

Now that I've had a day to research and think about it, I'm wondering about the family connection. My younger brother died of a sudden stroke at age 43. And I wonder if my myriad heart problems aren't because of it. The one health symptom I've had for a long time is really tired, achy legs. Walking distances has always been a problem. I had a stent placed in the left leg two years ago because of a blockage. I'm a big guy, but not a huge one.

I'll be curious to see what the specialist has to say.

Regards

[Holley]

I had no idea strep could cause so many things. My mitral valve looked indicative of someone who had rheumatic fever. Strep is a rheumatic disease I learned.

I'm sure the hematologist will do a family history but be sure to mention your brother. My father and first cousin both have Multiple Sclerosis, my sister has Crohn's and I mentioned my cousin earlier. As I started to delve deeper into family medical history, I assumed my paternal grandmother was the link. She'd had 3 miscarriages and a a stroke both of which are common with APS. I believe she probably had it but wasn't tested. Turns out her sister had lupus.

Be sure to check in after your appointment and let us know how it went.

Lisa