APS positive but won’t diagnose - Hughes Syndrome A...

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APS positive but won’t diagnose

Anich78 profile image
14 Replies

Hello everyone, I hope you all are well.

So I tested positive for Cardiolipin IGM twice...very highly elevated levels...however my rheumatologist has advised she can’t diagnose me with APS because clinically I don’t fit the criteria (not enough miscarriages-I’ve had 2 miscarriages and I have two healthy full term children and I’m currently 13 weeks pregnant and no blood clots).

I’m taking a baby aspirin daily and my hematologists is hesitant to put me on Lovenex since I haven’t been officially diagnosed with APS.

I live in South Florida where we dont have many doctors familiar with this disorder. I want to find another rheumatologist as the one I have now doesn’t seem to really care or be interested in my case.

As far as symptoms, I get a burning sensation in my hands, feet, legs and arms that comes and goes throughout the day. I’ve been to a neurologist, a PCP, cardiologist, rheumatologist and hematologist. No one can explain the burning. The neurologist doesn’t feel it’s neurological since I experience the burning on both sides of my body and since it comes and goes. Says it could be migraine related.

No one around here knows anything about what I’m experiencing and I’m growing frustrated while my symptoms persist. I’m also afraid for my baby and want to make sure I’m doing everything I can to increase the likelihood of a healthy full-term baby.

Any suggestions? Please help. Thank you in advance

14 Replies
MaryF profile image
MaryFAdministrator

Hello and welcome, firstly here is our charity website: ghic.world, this has some specialists on it in the USA. Also in addition other members on here in the USA can guide you to the nearest person who can help you. KellyInTexas has excellent knowledge of the USA and where certain medical consultants are located. Your new doctor or existing one, hopefully will run additional tests,to check for B12 deficiency, also D, Folate and Thyroid function. Not always the cause but a lack of B12 can add to peripheral neuropathy, and some do get burning sensations. While you wait to see another doctor, please do go to your existing one if you feel unwell at any stage during your pregnancy.

MaryF

Anich78 profile image
Anich78 in reply to MaryF

Hello and thank you for your reply and the valuable information you provided to me. I will check the website just as soon as I finish my replies here.

My b12 was a little high, D was just shy of being normal and thyroid was within normal pregnancy ranges.

I’m being seen by a hematologists, an OB/GYN as well as a Perinatal doctor. Between all of them, I am at a drs office at least once a week.

Thank goodness I am feeling well and haven’t had any issues outside of this disturbing burning sensation that I feel.

Out of all my doctors, no one understands what it may stem from.

My primary care physician said he doesn’t want to check my blood until after the pregnancy once things have returned to “normal”

For now I’d just like to find a rheumatologist that I can trust that has experience with APS.

Your resources seem like they will be valuable.

Thanks again!

MaryF profile image
MaryFAdministrator in reply to Anich78

That is great that they have already done so many tests, however maybe get them to look into this? mayoclinic.org/diseases-con... Not saying it is that, but worth investigating. Also this article: scielo.br/scielo.php?pid=S0... MaryF

Anich78 profile image
Anich78 in reply to MaryF

I suggested this to my neurologist about 2 weeks ago who dismissed me by saying peripheral neuropathy is a brain issue and is one-sided and chronic.

This is contrary to what I have read in the past however.

He is hesitant to perform any mris since I am still in my first trimester.

He scheduled to follow up with me in 6 weeks, which will be a few weeks from now and said if my symptoms were persistent that he would consider ordering an mri.

I’m finding that my specialist are being very conservative, I’m

Not sure if it’s because of my pregnancy.

I actually scheduled to visit a different neurologist (an appointment I scheduled about two months ago) and once I arrived was told the dr wouldn’t see me because I’m pregnant. So unfortunately I haven’t been able to get a second opinion yet.

Lure2 profile image
Lure2

Hi,

In this case I understand your Rheumatologist. I wonder though if she has experience of persons with autoimmun illnesses and especially APS? You only say she is not interested. That is important to have a Doctor who works with this illnesses at a daily basis.

It is good you take a baby-Aspirin in any case. I suggest you read about APS so you know of the symptoms. You say you have a "burning sensation" in several parts of your body. That is nothing special as to APS as usually we have symptoms from one side of our body. Numbness etc.

Some people can be positive to one of the antibodies without having the illness.

Do you have relatives with autoimmun illnesses? SLE, Sjögrens, RA etc etc? That can be a clue.

In fact it can be very difficult to give a correct diagnose as often we have to fight ourselves to find an answer.

I can tell you I got my APS when i was around 40 years old and then I already had 2 children.

Today I am triple-positive with high titres and take Warfarin (live in Sweden) which has been my lifesaver after a lot of neurological symptoms and very high bloodpressure. I do not know if I had the antibodies positive before I had the severe symptoms.

I wish you luck with your birth and please stay with us here as you can learn a lot from our wise members. People without APS may have miscarriages also. My youngest daughter is going to get her first child in a month and she has got 2 miscarriages last year but have no antibodies positive so far. It is a curious illness indeed. APS may run in families.

Anich78 profile image
Anich78 in reply to Lure2

Thank you taking time out to reply to my post, sincerely. Also congratulations to your daughter, she is nearing the finish line and I’m sending prayers and positive thoughts towards your healthy grandchild.

My current rheumatologist doesn’t seem interested or possess the knowledge. When I ask her questions, she answers in a round-about manner which ultimately leads to my understanding that she is unfamiliar with APS.

I receive text book answers from her that I can simply find on google.

I had an extensive blood panel done at my OB’s office just a month ago, my thyroid was within normal pregnancy range, my b12 was high and my D was just shy of the normal ranges.

I do not know if any relatives that have autoimmune diseases but was told that one of my aunts possibly had lupus.

Lure2 profile image
Lure2 in reply to Anich78

Thanks for your good wishes to my daughter!

As you say yourself, try to find a Rheumatologist, who works with these illneeses every day and who has knowledge of APS. I have already two healthy grandchildren from my other daughter.

Try to learn as much as possible as knowledge is power. Good that you have taken so many bloodsamples already and that those are ok.

See to it that you do not get high bloodpressure. I assume you have chequed the bloodpressure.

Anich78 profile image
Anich78 in reply to Lure2

Yes I get my blood pressure checked once a week at my appointments.

KellyInTexas profile image
KellyInTexasAdministrator

Hello,

I’m not sure if the information I give you will be of help or not, but I certainly hope it can be.

It is always tricky to see another doctor once you are under the care of another...especially when it comes to insurance, etc.

Firstly, congratulations!

Secondly, where are you located in Florida?

Thirdly, let me tell you what I know and how I’ve come to know it.

There is a Rheumatoligist in Panama City , Florida, who is know to have quite a few APS patients. My understanding is he is quite comfortable and well versed with APS.

Dr Kenaway

(850)215-6400

I know of him because I used to to have a very good APS specialty APS consultant , Frank Lu, in Panama City. He was an independent practitioner. Sadly he passed away almost two years ago now. She has full APS, has met the criteria with two full and serious strokes.

I do know she has had a difficult time finding a hematologist to replace our lovely and competent Dr Frank Lu. She had only just started with him - a recent diagnosis when he suddenly passed away at a daily young age in his early 50’s.

I know she has considered coming to stay with me here near San Antonio and seeing my Hematologist if she feels she needs to, but between her internist and her excellent diet which is high in protein and carbs only from vegetables and oils from things like avacados ( her doctors are monitoring closely and approving this diet) she has stabilized her INR and so far so good.)

If you’d like to private message me I can stay in touch with you and let you know what she thinks.

Anich78 profile image
Anich78 in reply to KellyInTexas

Thank you so much for your congratulations as well as the information for the rheumatologist. It’s so unfortunate that there aren’t more doctors that are familiar with this disorder that are closer to me.

Panama City is about a six hour drive for me. My husband travels frequently for work and since I am considered high risk, I know my doctor won’t consent to me taking a six hour drive alone.

Ugggh, always a roadblock (pun intended 🙂)

I will reach out to Dr Keneway’s office and see if I can get an appointment shortly after my delivery.

Thanks again for the info!

KellyInTexas profile image
KellyInTexasAdministrator in reply to Anich78

You are welcome!

Wittycjt profile image
Wittycjt in reply to KellyInTexas

Thanks Kelly i added Dr Kenaway to my list too

KellyInTexas profile image
KellyInTexasAdministrator in reply to Wittycjt

I can’t personally recommend, but at least he’s supposed to be , “ in the know!”

Wittycjt profile image
Wittycjt in reply to KellyInTexas

I understand but at least it gives those who are looking a start point hopefully! Hopefully Anich78 will let us know.🤯

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