A few test results in. Still waiting on important ones.

[Tranquility1]

Still waiting, waiting, waiting on the antibody tests.

The few results that have come back show high cholesterol (even though I am a vegetarian). I need to go back to being a vegan. i don't believe my body processes lipids correctly.

Low Bun/Creatinine ratio at 8

Vitamin D definiciency at 19.7 ng/ml

High platelets at 384.

Does any of this go with Hughes Syndrome?

Thanks!

[Lure2]

Hi, When did you do the tests? Was it all of them inkl Lupus Anticoagulant? In Sweden it takes a couple of weeks. Is your doctor calling you or are you going to call the doctor? I always ask for copies of everything that has to do with this illness. I am so lucky that my hospital has all the papers of me since the beginning (I hope they have, at least I have) and when I go to the hospital they at once see that I have Antifosfolipidantibodies and a high risk of tromboses.

I do not think that the above figures can show that you have got APS. Fingers still crossed!

Best wishes from Kerstin in Stockholm

[GinaD]

I was browsing through your previous posts and came up with a random thought. First. Be advised that I am an English major suburban housewife with no claim to any medical authority or training. So my random thought might be worth bonkers.

The low D and the night time leg jerks AND the high cholesterol ( was it HDL or LDL ##s that were high?) may point to a GI tract absorption issue. You might consider trying a gluten free diet for a couple of weeks. And/or read Dr. perlmutter's " Grain Brain.". You'll be surprised what gluten and too many carbs can do to an otherwise healthy body.

Let us know.

And that cardiolipin antibody test can take a coon's age to run.

Gina

[Tranquility1]

Thanks Kerstin and Gina!

The two tests that I am waiting on the results are:

1) The Antiphospholipid Syndrome, Comprehensive (Esoterix)

Test Includes:Activated partial thromboplastin time (APTT); APTT 1:1 NP; APTT 1:1 saline; anticardiolipin antibody, IgG; anticardiolipin antibody, IgA; anticardiolipin antibody, IgM; antiphosphatidylserine, IgG; antiphosphatidylserine, IgM; antiprothrombin antibody, IgG; antiprothrombin antibody, IgM; β2-glycoprotein I, IgA; β2-glycoprotein I, IgG; β2-glycoprotein I, IgM; dilute Russell's viper venom time (dRVVT) confirm seconds; dilute Russell's viper venom time (dRVVT) ratio; dilute Russell's viper venom time (dRVVT) screen seconds; hexagonal phospholipid neutralization; lupus anticoagulant interpretation; platelet neutralization

2) The Markers of Coagulation Activation (Esoterix)

Test Includes:D-dimer quantitative (automated); prothrombin fragment 1+2 MoAb; thrombin antithrombin complex

Kerstin, you are right about the importance of paperwork. Thank you for the hint -- I surely need to do a better job of getting copies and keeping it together and organized. I will make sure to get copies this time. I am trying to be patient waiting for my test results, but after decades of unknown, it would be fabulous to have a diagnosis that pulls it all together. I know the diagnosis wouldn't be the end all of cure -- but it would be a start. My pendulum keeps swinging back and forth between believing my symptoms are due to APS to believing it's going to show nothing and I'll be back at square one again of unknown.

My grandmother died of MS at age 59. However, she was diagnosed very late and our symptoms are often the same. For example, in my early 40's I had a period of months where my muscles in my calves kept contracting and it would be very painful. I especially noticed it when driving. When getting out of the car it felt like I was ripping something if I tried to put my heal on the floor. The neurologist said it was neurological where the brain kept over sending the message to contract that muscle. I mentioned to my mother about the issue of getting out of the car and having the ripping pain and she told me a story about her mother with a very similar experience of getting out of car and her gas peddle leg. At the end of my grandmothers life, the doctors were still debating if it was MS or something else. My cousin was a late diagnosis of MS. Now that our daughter is showing symptoms, the unknown needs to stop.

Gina, an English major suburban housewife with similar symptoms is the perfect person to point out possible lifestyle changes that might make improvements to the symptoms. I will get the "Grain Brain". I have never gone gluten free. It's something I need to research, as it seems several people have profited from making changes to their diets.

I appreciate your understanding in my waiting for results. I look forward to answers. After decades of doctors telling me that "Yes, the tests show that there is something wrong. But no, we don't know what it is." I do feel at this juncture that getting a diagnosis would be reaching the pinnacle of that mountain climb. Yet, I realize that even with diagnosis, there is another hidden mountain behind the diagnosis mountain that will still need to be climbed.

"The journey of a thousand miles begins with one step." Lao Tzu

My step for today is patience.

Have a great day and thanks again!!!

Janet

[MaryF Administrator in reply to Tranquility1]

Also be aware that with these diseases Thyroid issues are prevalent and not always picked up by doctors, unfortunately. A Thyroid out of whack can make the cholesterol rise! MaryF

[AnnNY]

Tranquillity--

It only took a week for me to get the results in New York. My results were negative but it appears there is a different definition of negative in the US and on the Hughes site. My cardiolipin Igg was 8 and that was the 2nd time 13 years apart. I've already had one incidence when being treated with heperin sort of me brought me back from a neurological flare, and so I've just be treating myself with aspirin, which has made quite a difference. I'm also taking plaquinil. I've been begging my doctors to let me do a heperin trial, which I'm wondering would help more with word finding, concentration, reading, writing, memory sorts and neuropathy. I'm wishing you better luck than I've been having, so if you have very positive tests, I hope they will treat you in the US and if not perhaps you can get to London. I also am hoping Dr. Hughes results with serio-negative APS makes it to the US, so doctors here will be willing to do a heperin trial, especially in the places that are supposed to have the most experience with APS here. Sorry its taking so long to get your test results. I know you are eager for an answer.

[Lure2]

Hi, I have also had pain in my calf contracting. I will tell my Rheumatolog this. It is often at night. It is awful. I know my dad had this too. I have not thought it could have something to do with APS.

I have still my fingers crossed! Kerstin

[Hidden]

Tranquility, for more information about cholesterol issues, if you have not already, you might want to check out the publications and recipe books of Dean Ornish and/or Caldwell B. Sesselstyn. I found them to be extremely helpful.