Sneddons syndrome

[jennymayt]

I was diagnosed at 38. I'm 42 . I have the purple circles on my legs. Always have. I've had blood clots. I've lost my leg. Had clots in intestines colon kidney. My eye sight has deteoriated. Migraines , mini strokes a few years back. Bowel obstructions. Reynauds syndrome. Equilibrium is off. Extremely tired. I have burning sensations on the sides of my breasts. (I don't know if that is a symptom of sneddons or not.) My memory is shot. I'm from Oklahoma city Oklahoma. If there is anyone else who can maybe let me know yes it is the sneddons. I would like to know off the burning it's part of it. It almost feels like it's in the vains. With a hot cattle iron. Sometimes I jump when it hits. It burns and scares me at the same time. Thanks so much

[MaryF Administrator]

Hi there and welcome, for your interest I enclose this medical paper: ncbi.nlm.nih.gov/pubmed/109... We have many members from the USA on this forum. Have you had the blood tests done for Hughes Syndrome/APS? If not I enclose them here: hughes-syndrome.org/about-h...

I also enclose this link, some names on here in the USA, however other members will be likely to have more localized knowledge for you: apsaction.com/

MaryF

[jennymayt in reply to MaryF]

Thanks dip much. There are so many medical trends and names. I don't remember them all when they say then. But as much as I've been in the hospital have learned a ton. I have actually schooled3 nurses for about 30 min on the disease from things I've learned. And they've all googled the disease. Lol. Alot more Dr and nurses here in Oklahoma are more knowledgeable about the disease

[jennymayt]

I've been in and out of hospital so much I couldn't tell you what all the test they've done on me. I know they've done a ton of tests. I don't know all the exact names but when I was in hospital after they amputated my leg they told me.

[MaryF Administrator in reply to jennymayt]

I hope you are getting better, please have a very thorough look around our charity website and also give it to any medical staff to read through if you think it would be of help to them: hughes-syndrome.org/ MaryF

[jennymayt in reply to MaryF]

I love that I finally found this web site. When your dealing with something like this it hard. It's even harder when no one knows about it and you can't find someone with the same thing. You feel lonely sad angry and very isolated. It's nice to know there are other ppl out there. Thanks so much.

[MaryF Administrator in reply to jennymayt]

There are many people on here in a similar position to yourself, and you may find you have members living in your area, geographically speaking, and being on line here with others who understand your position, will hopefully cut down your sense of isolation. All the best to you. MaryF

[jennymayt in reply to MaryF]

Thanks so much.

[jennymayt]

Thanks I will at my next appointment.

[Manofmendip]

Hi Jenny

My colleague, Mary, has given you some great advice. I just wanted to also welcome you here.

Dave

[jennymayt in reply to Manofmendip]

Thank you

[GinaD]

Hello from Wesr Virginia!

[jennymayt in reply to GinaD]

Hello

[jetjetjet]

Welcome from Casey and I -- we are in N.H. -Concord area .

[jennymayt in reply to jetjetjet]

Thanks I know ppl that lived in concord

[jetjetjet in reply to jennymayt]

ppl --??

[jennymayt in reply to jetjetjet]

People

[jennymayt in reply to jennymayt]

A friend of mine used to live in Concord , NH

[jetjetjet in reply to jennymayt]

Who might that be ??

[Wittycjt]

Who is your doc in Oklahoma? Thanks. I know this is an old post but am looking for a doc there

[KellyInTexas Administrator]

Oh goodness. You sound like a more severe version but an exact copy of myself... except mine is arm, and I haven't yet lost it- and it's doing better. I'm hoping it stays that way- DVT -vs - arterial clot is likely the difference in our cases . So sorry.

Loosing my vision as well. Hoping your vision has stabilized. Mine has not.

Optic nerve atrophy?

Organ clotting better? It takes INR of 3.8-4.0 to stop the bowel clots and little "schrapnel" from buck shot affecting my kidneys. FYI. It's hard in Texas /Oklahoma area to find specialists.