Flare up

[armywyfRN]

Hello everyone. I pray that you all are managing well. I have not been to this group in a while because when I was seen by a hematologist (on our military base) she said that even though I had documentation of my diagnosis of APS, I didn't actually have it. She further stated that my reproductive specialist told me that to ease my mind of another miscarriage. I only had 2 positive results.

Well, any who I'm back with another flare. I have to be honest, it's beginning to appear more along the lines of MS. The blurred/double vision, foot drop, tingling/numb sensation, neuropathy and neuralgia, poor speech patterns, trigeminal neuralgia, diminished rectal tone, abdominal spasms. I'm so confused. Do I have APS or not? I received the diagnosis 7 years ago but was it accurate.

[MaryF Administrator]

Hi there, please remind me where you are located? If you had blood tests done and it showed up, and this is in your documentation then yes you have it, also your history of miscarriages. I can't imagine any obstetric specialist saying you had it when you do not. Patients can go in and out of negative testing, but the disease does not go away. A percentage of patients with MS turn out to have Hughes Syndrome/APS. You may need consider getting a second opinion with somebody who has full knowledge of the disease rather than half of it. Please look here at this information from HSF charity web pages:

hughes-syndrome.org/about-h...

dailymail.co.uk/health/arti...

MaryF

[armywyfRN in reply to MaryF]

Good day Mary. I am located in the U.S. in Ohio. Thank you for responding to my post. I'm so confused. I was very ill for several weeks earlier this year. Now I am stricken again with the same things but worse (excluding the TIA).

[MaryF Administrator in reply to armywyfRN]

Other members on here may help you with regard to the nearest specialist to you, or the link in Lure2's reply is what I sent you. It is very important that you get some real expert advice on this. MaryF

[Lure2]

I have read that you have met a neurologist that was awful. You have had miscarriages and a TIA also. You also had a diagnose 7 years ago.

Have you looked at apsaction.org....../doctors in different countries knowing APS? You must speak to someone around Ohio that knows this illness or go to London.

Have you read "Sticky Blood Explained" by Kay Thackray? Are you on any anticoagulation? Have they tried you on anticoagulation? Probably not.

Hope someone else can help you to find an APS-specialist.

Sorry this was a lot of questions but you really need an APS-specialist!

Best wishes from Kerstin in Stockholm

[Manofmendip]

Hi.

I agree with both of my colleagues.

I have had many of the symptoms that you have, including foot drop and abdominal cramps and I have APS.

Best wishes.

Dave

[loretta1106]

I have APS and am in New York City. I had a stroke in March and have switched all my doctor's to a nearby hospital (NY Presbyterian). I don't know what kind of coverage you have, but I find that having all my doctors at a university based hospital has made a huge difference. First of all, they know what APS is--that's huge. I had a former physician who not only wasn't familiar with APS, but didn't know how to monitor my INR and warfarin properly. I now have a good internist who monitors my meds and a great rheumatologist who is a lupus/APS specialist and monitors my blood regularly. All my tests and notes are on a computer system I have access to.

Having APS is not easy and I know the flares and symptoms are puzzling sometimes but it's crucial to not only have good doctors, but doctors that are familiar with APS and don't make you feel like you're going crazy because they don't understand the symptoms or APS flares (very similar to lupus flares).

I wish you the best and hope you find the care you deserve.

[armywyfRN in reply to loretta1106]

Thank you so much. When I come out of a flare up...I kinda give up because the doctors think I'm insane. It's a double fight, the fight within my body as my systems are going haywire and a fight with medical personal who do not know much about APS other than it causes miscarriages. When I was diagnosed 7 years ago I didn't know much about it either. After my TIA, I was my duty to learn about it. I will not give up this time. Thank you again for the encouragement. Praying for your wellness.

[loretta1106]

Don't ever give up. I also go to a Lupus Support Group in NYC even though I don't have lupus. My ANA is 1280 since my stroke and there are many people in Lupus Support Groups that have a variety of autoimmune diseases including lupus. They will not make you feel like you are crazy. Keep educating yourself, talk to other with APS and know that flare ups are most caused by stress, lack of sleep, overdoing it, etc. or they just happen. This is the link to the NYC Lupus Groups. The director, Jessica, might be able to help you find a group near you. Think about how you can help yourself as well as finding md's that can help you and make you feel good about yourself. Good luck.

lupus.org/newyork

[Lure2 in reply to loretta1106]

Hi Loretta,

I hear that you have found your doctors and groups etc. Very good and I think unusual in most places.

I agree with what you say. We must take the fight and learn to educate ourselves.

Best wishes to you from Stockholm and Kerstin

[loretta1106 in reply to Lure2]

Thanks Kerstin. We must educate ourselves and often others. I saw my internist Wednesday and my INR has usually been in the low 2's. It went up to 2.9. She didn't change my warfarin level. I told her I feel better with my INR higher and even would feel good if it was in the low 3's. I learned that from people in this forum and I'm grateful. I definitely have more energy and feel less nausea which is problem when I have APS flares which seem to be the same as lupus flares I've learned. It's sure is a journey. Take care.

[armywyfRN in reply to loretta1106]

Thank you so much! I just left a psychiatry appointment. I found that I did I have to fight (in a polite manner) for myself. I had to remind him that I DO have a documented diagnosis of APS. My referral to him was based on lack of knowledge of APS and that it is possible to be sero negative (there are documented case studies) as well as no one has fully ruled out MS.

[loretta1106]

Good for you. We have to educate ourselves and advocate for ourselves and often educate others about APS. I have set up a portfolio with many folders--one for each doctor, one for referrals, one for tests pending, one for tests completed. I've gotten very organized with this whole dx. Take care. You're doing great!

[julieej]

Are you able to see doctors off base? Sounds like you need to see different doctors. Can you get a referrAl to Cleveland Clinic?

I, like the other woman who responded, saw MD's at NY Presbyterian and they were very well informed on APS. You need to find some good doctors. Good luck. Don't give up!