Someone please help me!! Just got off phone with a neurologist who has ran every test under the moon because of my slurred speech and

[MALINGER1]

left side weakness tell me after a blood test confirmed, I have APS. That I do not have APS because I have a unremarable MRI.Somebody please help me tired!!!!!!!!!!!!!! .Is this true?Doctors with no APS experience.

[Suzypawz]

Hi I presume you have been checked by a specialist that has confirmed you have APS with the blood tests?so this must be in writing surely for the neuroligist to read? If you are not under a specialist as of yet you need to get an appointment to see one so you can get the correct medication + advice. Have you been put on any blood thinners yet? What have you been advised to do so far? Let us know how things progress, you need to see a specialist to sort this out, Sue x

[MALINGER1 in reply to Suzypawz]

On coumdin 7.5 to 10 and the hemotoligist put me on this for life had but after the 3 positive aps test.I am in the US and planning to move to Uk for my health.Just to be near Dr.Hughes

[jessielou]

Hi hon

Perhaps look for a good rheumatologist or haematologist, I understand your in the US, maybe Jet in New Hampshire can help with info on docs! Will mail him!

In the meantime I have Aps, but haven't seen a neurologist and haven't had an MRI either! So don't panic! I have had miscarriages, Dvt, PE and other symptoms and positive bloods!!

You are not a malingerer, you need help, just a case of finding a doc who knows Aps hon! Hang in their, we here to help if we can,

Take care gentle hugs love Sheena xxxx

[MALINGER1]

Had 3 misscarriages ,DVT,skin ulcers,thrombosis,livedo reticularis•Migraine headaches, sometimes with visual disturbances

memory loss•Other neurological symptoms including episodes of partial or total vision loss, dizziness, vertigo, loss of balance, seizures, and other abnormal movements. positive APS x3. What more do they need?

[jessielou in reply to MALINGER1]

Hi hon,

Well with all that, it's no wonder you are so angry with neuro, what an idiot! Have mailed Jet in the Us see if he has any suggestions, but would be great to meet you if you do decide to move to Uk!

So sorry you having all this nonsense, we do get docs like that here, it's a frustrating journey to diagnosis with Aps. That's what we're about at Hughes foundation, raising awareness amongst doctors and the public, as well as supporting each other when life just hurts!!!! Here when you need us!

Take care gentle hugs love Sheena xxxxx

[jessielou in reply to jessielou]

Ooops meant to say thank goodness someone at least has the good sense to give you coumadin. Don't let them take you off it hon, and if you do intend flying you need heparin injections for the flight!!!!

Hugs xxxxxx

[jetjetjet]

Hi -Malinger 3 positive aps tests,and neuro still dosn't have a clue?you need a rhuemo--to totally get you in check- nero 's are ok in there field, but not able to dianosis aps, in my opinion- where are you in the us----- jet

[Hidden]

Hi there, sorry you are going through this..... I hope we can help you and give you some good support.

Where in the USA are you? Maybe we can help find doc here.

Are you sure that your INR is supposed to be between 7.5 and 10? It seems too high for anyone....

Are you even eligible to move to the UK? Their immigration is pretty tight and not like moving to a new state.

[MALINGER1 in reply to Hidden]

no the amount of coumadin is that nightly.no my range 3.Yes trying to get employed at embassy .But I am active army for another 3-4 mos then retire at Fort Eustis near Virginia beach Va

[Hidden in reply to MALINGER1]

That makes more sense.... I thought that was your INR! Seems about right as well for dosaging- which changes with every person and also sometimes by the day of the week!

I think you should see Dr Ortel or the other one at Duke if at all possible. Please try to get this sorted out. Why did they say you didn't have APS? What was his rationale...

Where do you go when you retire from Army? Will you stay in that area?

[Hidden]

Here are two docs at Duke.. Both do research on APS... Dr Ortel is one of the top hematologists in the USA, and Dr Allen is one of the top rheumatologists at Duke....

dukehealth.org/physicians/t...

rheumatology.medicine.duke....

[MALINGER1 in reply to Hidden]

Thank you

[MaryF Administrator]

Hi there, it sounds as lots of people are giving you good leads here. I do hope it sorts itself out with the medical leads you now have. A haematologist or rheumatology team is often the way to go, or indeed any medical practitioner who has become passionate enough to learn about this condition. Do please keep us informed. MaryF x

[sbncmo]

Hi. I hate to hear you have gone thru so much & are getting doctors that say yes, you have APS & no, you don't have APS. I'm with Kristina - why did they say you don't have APS? Surely they did a "titer" blood test (not sure on the spelling) which reveals clotting, early when you started having your symptoms. I assume you saw a neuro for the weakness, that a different doctor sent you to him? I don't believe an MRI would ever show anything about APS. I agree with everyone here - get a hematologist. Your neuro must have sent your lab out in order to get a diagnosis of APS since it isn't in his field. So, please go to the specialist for APS. You have suffered with this too long.

I came home one Sat. evening to find my husband having a bad TIA & took him to the ER. The ER doctor ordered the titer blood test along with several others. The titer came back with a HIGH positive, but the idiot sent us home saying my husband had bronchitis. When I took him to our regular doctor on Mon., she was furious & ordered a CTscan. When we were leaving, the tech said we would be called the next day, but it wasn't 5 min. & we were called back & he was admitted into the hospital - his lungs showered with PE's. He coded during the night & they revived him, THANKFULLY. But, he lost 1/3 of his lungs due to action not being taken soon enough.

That was 5 years ago & we find ourselves still fighting the lack of knowledge, to put it nicely, among many people in the medical field. So, malinger, don't give up. You will find a doctor that understands what you are going thru, who will be able to answer all of your questions. And when you do, hang onto him or her. Hopefully they will be able to direct you to additional doctors in fields of medicine where you need treatment & they will be able to give some basic instruction to those doctors & nurses. And take comfort in the fact that the new generation of nurses & doctors, the students now working with our doctors & nurses, are more informed about APS. (For example, a student nurse was in the last time my husband went in to get a testosterone shot & all 3 started talking about APS because our nurse said he had APS & my husband said he can feel blood clots move, but most people don't believe him. Our nurse said she's always believed him & the student nurse said she believed him. The student nurse said APS is standard education now & described what the deformed blood cell looks like. She said if enough blood cells stick together, a person can definitely feel them move & it hurts.) So, APS education is slowly advancing.

I'm sorry to write so much. But I do hope you find the best doctor you can very soon & that you start feeling better. Everyone here cares about each other.

Shelia

[MALINGER1 in reply to sbncmo]

The hematologist the doctor that deals with blood, tested me twice both positive APS .The neurologist was only brought in the picture because I have stroke like symptoms that we all know is a symptom with TIA that does not show on a MRI.He was the one that said my "MRI did not have any abnormalities that APS usually shows on a MRI .IT WAS UNREMARKABLE NORMAL".I AM TIRED I am so ready to move to the UK.I will be an advocate in the US for the awareness of APS since I am a wounded warrior of the US ARMY.

[sbncmo in reply to MALINGER1]

Just out of curiosity, did you go to the ER when you started having TIA symptoms & get referred to a neuro from there, or did you go to you primary care doctor? Either way, you are right about the MRI - it doesn't show APS. Clots will show up with a CTscan & ultra-sound scans. And the symptoms of TIA's can last for several days. I'm just glad you have your hematologist. And I'm glad you are going to be an advocate for us here, but don't forget about yourself (i.e. messing with the neuro who knows nothing about APS).

Keep us informed.

Shelia

[Hidden]

I am confused...re: APS DX....when I first was diagnosed my "blood clotting" index number was 25...per my MD this meant I have "sticky blood"....also my ANA was in the + range...still is.....but my "blood clotting" indicator has been 9 for 2 years...since I began taking 320mg Aspirin daily........my Rheumatologist still tests every 90 days.....So if I went to a new MD would they tell me I do not have APS?

[kathyD64]

what a nightmare and a battle we all have to experience!! why oh why do medics have to muddle the water - if positive antibodies then that means we have APS - yes it may be elevated in pregancy only for some without any further health issues but when we present with strong history it is so frustrating that some medics always need blood results to co incide with text book !!

i cant wait for the day that we just get treated with out judgement or denial we have not got this complex condition but with care understanding and most importantly they LISTEN TO US THE EXPERTS IN THIS CONDITION why should we apologise for some blood tests not been developed yet to find a cause or antibodies that vary go and come but if we are compromised with stroke symptoms then treat us its not our fault current imaging does not show clots - more i read blogs the stronger the arguement to micro clots causing damage but not leaving evidence - medics need to think outside of the box and treat the patient as they would have years ago without needing blood test to confirm things!! long rant sorry but recent mri for me was normal yet bundle branch occlusion on ecg ignored and visible symptoms of vascular event now put down as raynauds!!! because inr above 2.5! kathy xx

[GinaD]

I was diagnosed by a heme outside Cinn, Ohio. My thoughts are with you. Persevere!

[marse623]

I've had multiple miscarriages, 1 stillborn, livedo reticularis, severe migraines, visual disturbances, memory loss, and had a seizure DURING the EEG (track brain activity) AND 3 consecutive blood tests + for APS....I'm on 81mg of aspirin a day and nortriptyline. Thankfully that has managed to put the the severe migraines at bay for now, and I try and keep my stress level down, eat healthy and get exercise. I am 37 years old, and have a family, and a full time job, and it seems that many of our stories are the same, and our lack of diagnosis by doctors is just unbelievable. I am treated majorily by residents, who are fairly open to what patients have to say and I have gotten a lot further than I would have with my other doctors, so that I have been thankful for. I am in California.