Glad to Belong Here!

[Michelle_Tower]

I am from Boston ,MA. I have had APS for nearly 20 years. In 1998 I was diagnosed with 7 strokes caused by APS. This is the first time I have got involved in a group. Never met anyone with similar issues. I don't feel alone anymore. Thank you all. I find this community open, very interesting and informative. Thank you all for being out there. Stay safe.

[MaryF Administrator]

Thank you for your great feed back, keep well. MaryF

[Ozchick]

Welcome-It's a great forum and very friendly. Don't hesitate to ask questions as our admin here are friendly and very knowledgeable.

[MaryF Administrator in reply to Ozchick]

Well thank you, we do our best!! MaryFx

[Kbjp]

Hi Michelle! I am also in Boston! I live in Jamaica Plain and go to Beth Israel. I was diagnosed a couple of months ago.

Do you like your APS doc? Who do you see?

[Michelle_Tower in reply to Kbjp]

I go to MGH. I like my care team, but I don't have an aps doctor or haemotologist. I have only had the one event in 1998. How does it work at BI ? I would like to keep in touch; listen to your experiences. This is something I didn't have and would like to help you if needed.

[milkwoman]

Welcome Michelle!

I live north of Boston. The people on this site (the whole of

HU) are AMAZING - kind, supportive and FULL of information!

I have lupus and Sjogrens, in addition to hypothyroidism. Even though I have tested positive for Cardiolipins, I don't have an APS diagnosis since, according to my docs, "I've not yet had an 'event'."

I beg to differ since before I was diagnosed (last summer) with everything else, I know I had some sort of PE. I just didn't know what was happening to me at the time.

My rheumy continues to test and watch me and I keep myself informed as to what to look for in the event something does occur.

Keep smiling and take care. 😊

[Michelle_Tower in reply to milkwoman]

Thank you

[mylafont in reply to milkwoman]

Why in the world would you have to have an event before you can have a diagnoses? Does that mean you are not being treated to prevent an event? This makes no sense to me, since an event has the potential to cause catastrophic damage. Have your rheumatologist test you for the other two antibodies (one of which needs 2 positives 12 weeks apart) and if they are positive, and he still insists on an event before a diagnosis without treatment, I'd find another doc.... in my humble opinion

[Michelle_Tower in reply to mylafont]

Hi, I'm not sure what you mean. I had 7 strokes and 5 miscarriages. I then had blood tests which where through the roof which gave them the diagnosis of primary aps. I left the hospital with coumadin, aspirin, and lovenox as a bridge.

[milkwoman in reply to mylafont]

I hear ya. I have been tested for all the antibodies - in April and again in July.

The results in April were:

Cardiolipin Ab, IgM: 37 MPL (<13)

Cardiolipin AB, IgG: <15 GPL (<15)

Beta2 Glycoprotein 1 AB, IgA: 3 SAU (0-20)

Beta2 Glycoprotein 1 Ab, IgM: 54 SMU (0-20)

Beta2 Glycoprotein 1 Ab, IgG: 1 SGU (0-20)

Lupus Anticoagulant: None Detected

and the results in July were:

Cardiolipin Ab, IgM: 29 MPL (<13)

Cardiolipin AB, IgG: <15 GPL (<15)

Beta2 Glycoprotein 1 AB, IgA: 3 SAU (0-20)

Beta2 Glycoprotein 1 Ab, IgM: 75 SMU (0-20)

Beta2 Glycoprotein 1 Ab, IgG: 1 SGU (0-20)

Lupus Anticoagulant: Not Tested

So right now, we are watching the numbers. I believe since I am still testing negative for the IgG and IgA antibodies, things are okay as is.

I will be tested again at my next rheumy appt. Ever since I've been on Plaquenil, I haven't had any indication of APS-related issues. I like my rheumy and trust her. She is very responsive to my needs and always explains things thoroughly. I never feel rushed. She did say that I could take aspirin but for now, I seem to be doing well without it.

[Michelle_Tower in reply to milkwoman]

Can @I ask were you go?

[milkwoman in reply to Michelle_Tower]

Lahey Health in Peabody

[mylafont in reply to milkwoman]

She's got you covered with all the tests. It's still possible to be seronegative. Hang in there and I pray you don't have any event.

[milkwoman in reply to mylafont]

Thank you! Yes, I pray for that, too!

[Sandrapanda]

Welcome! I am also from the Boston area. Looks like we are growing in number (unfortunate as this might be, maybe we can all make sure we are seeing the right people around here for treatment!)

[Michelle_Tower in reply to Sandrapanda]

I am up for that! Thanks.

[finnhop in reply to Sandrapanda]

That would be great! I think my hematologist is retiring so I may have to ask for suggestions ! I didn't know there were so many of us in Ma !

[jbrking]

Hello from the UK. This forum is great for sharing information and not being afraid to ask silly questions. Plus you're never alone as always someone here to chat 😀

[Michelle_Tower in reply to jbrking]

Thank you.

[DaCoach]

Hello from Illinois! There is a lot of information here. I did feel alone in the USA, but this forum welcomed me.

[Michelle_Tower in reply to DaCoach]

That is exactly how I feel too.

[Lure2]

Hi Michelle,

Hope you like the book. There are a second book by Kay also but the first one is the best one I think.

Glad you are here!

Kerstin

[Michelle_Tower in reply to Lure2]

I bought all three books. They arrive tomorrow. I will let you know how much I like i later.

[Lure2 in reply to Michelle_Tower]

All Three ...... that must be something I have missed.

Kerstin

[Michelle_Tower in reply to Lure2]

I think the last book is by a different author.

[mylafont]

This is a great forum. I'm in Louisiana and get most of my info from here. I want to get Kay's books and probably will but it's hard for me to read because of the effects the Topamax on my eyesight. I'll just have to take a long time to read them in large print on my kindle.

[Michelle_Tower in reply to mylafont]

Hi I understand visual problems. I have lost the left visual field of both eyes. It takes me a while to read and absorb the info. Thank you for replyin, hope to chat again.

[Lure2]

The third book must be from Triona Holden "Positive Options for Antiphospholipid Syndrome".

I have several books from Prof Graham Hughes also. I find "Hughes Syndrome: Highways and Byways" very good. (Facts about APS)

Also "Understanding Hughes Syndrome - case studies for patients".

Kerstin

[Michelle_Tower in reply to Lure2]

You are right, that is the third book.

I have a feeling once I start reading I'll want to keep going!

Thank you.

[Debbweb01 in reply to Michelle_Tower]

Hi Michele I just read the first and now that I know Dr. HUGHS wrot I'll read them! I read and retread chapter on CATOSTROFIC APS! I think that happened to me? Cuz she said I shud not ignore blue toes in chapter! My doc said I had blood clots spewing from my heart to my leg! They gave me lifesaving clot buster, but lost my leg anyway! I'd never know about CATOSTROFIC APS if not for her book! I suggest all to read it because I've made up my mind now to take a half an hour train ride to NYC FROM where I live to c an APS SPECIALIST! Good luck and good health! Bless you and welcome to this amazingly comforting site!

[jetjetjet]

Hi Michelle -- I live in Penacook N.H.

One of the males with this lovely Disorder .

The group here is fantastic , i have been on this site since about 2010 .

I was dia. Sept 1 2009 ,am an APS triple positive primary .

more and more people coming to this site from the New England area. for a awhile there i was the only one . then some from Maine and Vermont , Mass. The gals from Maine and Vermont I haven't heard from in years.

But welcome . Casey and I

[finnhop]

I live in the metrowest area of Massachusetts. I have tried to find an APS group locally but haven't found one that suits. I love you guys here. I learn more from you than the docs. At the very least it gives me the questions to ask. I was diagnosed in 2003 with aps. Have only been hospitalized twice with dvts so I consider myself very lucky when I hear about what others have to deal with. I just recently had a "flair" as my doctor called it. Basically every joint in my body began to ache all of a sudden. Going through a whole new set of tests for the other usual suspects. Feel good now except my BP up a little and I'm a little foggy. Again , I have so much respect for all of you who deal with multiple issues related to your APS ! Thank you so much for the info and comradery if this group. I hope you all have a happy and healthy holiday ! Deb from Hopkinton

[Lisa901]

I' from Boston area, too. Newly diagnosed this year.

[Michelle_Tower in reply to Lisa901]

Welcome.