My knees get like this alot its sensitive painful was briefly told it was livedo this is at its worst but if i warm up it turns bright red.(the redness on ny knees in this photo isnt from the rash its where i had been on my knees cleaning tub)
Look familiar : My knees get like this... - Hughes Syndrome A...
Look familiar
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falling2peices
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Hi,
Who has told you it was Livedo Reticularis? Are you diagnosed HS/APS? Have you seen a Doctor who knows autoimmun illnesses like Fibro and HS/APS?
Best wishes from Kerstin in Stockholm
Hi keratin
Mine is just the same I don't have fibromyalgia or APS or Hughes. I have the systemic sclerosis, overlap connective tissue disease,raynauds, sicca syndrome and erthromelagia.
Yes ma'am I have.
That's exactly what mine are like. Mine is all over leg and the knees are just like that. The royal free professor Denton diagnosed it as florid livedo reticularis.
Hello falling2pieces
As my colleague, Kerstin, has asked you, do you have a diagnosis of APS/Hughes Syndrome, as this is a forum for patients suffering from this disease, not a general medical forum.
Dave
Yes ive been diagnosed by a rhumatologist and my internal medicine dr. With livedo fibromyalgia and probable MCTD.
I have anticardiolipin antibody igm positive but they say I don't have the syndrome as I have not had a blood clot or lost a baby
Ive lost 4 back in early 2001 to 2006 and was told probably due to blood clot in the umbilical cord.
That's awful 💔
Sami13 That is so frustrating! I'm sure you have other minor symptoms though.
Hi Sami,
Did you have Cardiolipinantibodies positive twice with 12 weeks apart then it is a diagnose of HS/APS.
If this professor Denton (hope he knows autoimmun illnesses) says it is livedo reticularis (do not know what florid is but can ev guess) that could also point to a sign of Hughes Syndrome/APS. It is said that livedo reticularis is a sign of HS/APS. Mine did not look like that at all but the "florid" one perhaps looks like that.
If you have some other, perhaps neurological, symptoms from our illness try with baby-Aspirin and see if you will feel better. It is an antiplatelet-drug and may help with our "sticky" blood.
I think you should look for a Specialist of autoimmun illnesses and have a talk with him and take ev some more blood-tests.
Read also "Sticky Blood Explained" by Kay Thackray. She writes about the different symptoms we have. A good book to understand this illness. It is not quite new with the new oral drugs in it but we still have the same symptoms as a couple of years ago.
Best wishes from Kerstin in Stockholm
Hi Lure2 I have a question what neurological symptoms are you referring to? Thank you 😆
Hi falling2pieces,
The typical neurological symptoms for this illness;
dizziness, vertigo, doubleseeing, lost sight in one eye, headache with and without Aura, numbness, memory-losses, etc etc etc.
Kerstin
Oh wow maybe i should be more concerend about my livedo. I see a new primary physician tommorow ill ask her to test me because i have all of that but i figured was my fibromyalgia . Except the virtigo in the past year my balance is horible ive literally shut my own head in the front door and the sliding bath doors ALOT.. I still have no idea how im accomplishing doing that. I cant close my eyes standing i start swaying and ive hit my forehead alot picking up stuff. Thank you for that information
I have already forgot if you have had 2 positive tests and a diagnose and if you are on any anticoagulations for HS/APS.
You should take all the three bloodtests that are required for a diagnose once again and before you start with Warfarin as then it is not possible to take the Lupus Anticoagulant- test.
Obviously you have symptoms and that you should tell your Doctor. You need treatment!
Kerstin
Im currently not diagnosed with HS/APS only livedo r. And the blood tests Im not sure of i do have all my blood work dated back from 2003 is there any abbreviation for those 3 tests I can look and see if they eve4 ecen tested me. I do have hypothyroidism , fibromyalgia, mixed connective tissue disease , cfs
Also get an appointment with a Specialist-Doctor who understands the differences between the autoimmun illnesses, HS/APS, Lupus, Sjögrens, Fibromyalgia, Thyroidea etc.
They go hand in hand several of them and can be mixed up sometimes by Doctors who do not know how to distinguish between them.
Also ask for those tests that MaryF always talks of and which are really important. A Specialist also knows what tests to take and what treatment to give which is of course utmost important to feel ok.
Kerstin
Hi I saw my pcp last friday on the 19th and she ordered the Antiphospholipid blood panel so ive been patiently waiting but yesterday she called saying the lab couldnt do the test because the doctor sent only 4 viles of blood so i gotta go back today and give 6 viles of blood. Wow thats alot.
Hi,
I am sure they have taken the important bloodtests now. Very good! I can tell you I gave 7 or 8 viles last week. She said it was 1/2 dl
Good Luck!
Kerstin
1/2 dl.. im not familiar with what the dl means. The doctor wasnt familiar with aps and never heard of Hughes syndrome (not good) but she is willing to order any tests that i ask for and said she was gonna study on it incase mines positive so she can get me the proper care. Is there any other tests i should ask her for? Also to my suprise she said my thyroid came back fine which is unusual mines always not normal and i havent taken my synthroid so im gonna look at my test on that one.
Hi,
10 dl make one litre. Sorry we have those in Sweden thought you had it also.
I must tell you that I know practically nothing about Thyroid-issues as we are focused on Hughes Syndrome/APS on this site and I am primary APS and that means that I have no other autoimmun illnesses known so far.
The other Administrators have written about FT3, FT4, both thyroid antibodies which are TPO and Thyroglobulin TbAb, Ferritin also because of thats low your thyroid wont convert properly, B12 and Vit D.
Hope I got all now.
Kerstin
Hi again,
Still, I think you should look for a Specialist as it is not you who should tell your Doctor what to do. I do not know what "pcp" is (could it be general practioner or GP?) Is it a Hematologist or a Rheumatologist as those Doctors may be specialized in autoimmun illnesses most often, especially the Rheumatologists?
HS/APS is a rather rare and new (1983) reumatologic illness but also a blood-disorder .
Kerstin
I agree with you on needing a doctor who knows what shes doing. Pcp. Is primary care physician shes the doctor I have to go through to be able to see a specialist. My insurance requires a referral. On the testing i was asking if the Antiphospholipid panel is the test yall refer to on this site. I asked the dr if it consisted of 3 tests she just kept saying its a panel. And refered me to a dermatologist on august 14 . I worked for a dermatologist years ago and dont remember treating anyone with any clotting issues. If thats what i have. Id think a skin punch would be rather dangerous but im no doctor either. But thank you so much for the information
As HS/APS is a rheumatological illness you should be referred to a Rheumatologist or a Hematologist with Specialist-knowledge by your Pcp I think and first she should order the three bloodtests for HS/APS.
Anticardiolipin Antibodies (aCL),
Lupus Anticoagulant (LA),
Beta2GP1 (Beta-2-Glycoprotein 1)
These are the tests required for our illness on this site. Taken twice and within 12 weeks apart.
Hope you can get the help you require and need from your PcP .
Kerstin
Kerstin... thank you so much you answered my question perfectly. I will be sure monday these are the tests she runs .
These are the blood test she is ordering
Anticardiolipin Ab, IgG
Anticardiolipin Ab, IgM
Anticardiolipin Ab, lga
Beta-2 Glycoprotein I, lgm
Beta-2 Glycoprotein I, IgM
Beta-2 Glycoprotein I, IgA
Antiphosphatidylserine IgG
Antiphosphatidylserine IgM
Antiprothrombin Antibody, IgG
I can not see Lupus Anticoagulant (LA) I mentioned which they also test. Can not be done after you have started Warfarin.
Kerstin
Hi I guess I didn't see that one but my results are back and my lupus anticoagulant was positive what's that mean
You should have two test positive within 12 weeks to have a diagnose.
You must now look for a Specialist of autoimmun illnesses as I remember you talked about fibromyalgia and I also wonder if you are on some sort of anticoagulation? Perhaps I have asked that earlier but I do not remember this now.
Kerstin
I'm unsure why my doctor isn't waiting 12 weeks perhaps is because she has no knowledge of APS she just said she was referringme to a hematologist. I've never taken warfarin only baby aspirin a while back and plaquanile in 1999. I'm sure the hematologist will repeat the test .
It is now very important that he Hematoloist is specialized in autoimmun illnesses. That is exstremely important. You must find out about that!
Keep us updated please and good luck!
Kerstin
Thank you I will be sure when my doctor calls me with the appointment that the hematologist is specialistin autoimmune diseases
I told my doctor when she gets the referral to please be sure they are familiar with APS and actually treat APS patients she said she would
No I'm not on any anticoagulant
I hope you soon get a Specialist who can distinguish between the diagnoses you have got that perhaps will show something else with someone who knows autoimmun illnesses.
Then when you have taken the Lupus Anticoagulant no 2 bloodtest , you can start a proper Anticoagulation and you will feel much better.
Good Luck with this!
Kerstin
Thank you very much
Hi keratin I have 8 voles of blood last Monday morning I guess the testing takes a while because my Sra hasnt called me yet or posted my results online. Do you know long it takes?
Are you able to see the new picture i posted more clearly?
I am sorry but my Livedo Reticularis did not show up on my knees.
It is difficult to say but over the knees it looks a bit suspicious. I think someone sent a picture (perhaps APsnotFab) how it looks.
Try to find it. Anyway the Livedo come and go again so it can be difficult for the Doctor to see. Better to do the tests and find out if you have other symptoms. I think you mentioned neurological symptoms to me. Also if relatives have the symptoms. Can be important if your antibodies are negative.
Good Luck and please let us hear how it goes for you.
Kerstin
Apparently im being questioned on here but wheni respond I get ignored thats not very professional. I asked nothing on here that wasnt related to anything except livedo. Ive already been diagnosed but a dr i didnt come on here asking you all to diagnose me or even question me like im ignorant and dont know what im talking about. I came here hoping to gain more insight about a already diagnosed condition thinking I could get educated further. I have been respectful and polite and excpect the same in return. Were adults arent we? You dont know what someones been through or what disease or contion a person has. What i asked was if you had any suggestions.. now if you would like i could post my labs you know my rhum panel w my anas and all that jazz . thank you and good day
I found you very helpful. Thank you falling2pieces. Some people spend many years getting a correct diagnosis. Surely everyone should be welcome to explore possible and diagnosed. If not I'd rather leave the group
Hi falling2pieces,
I am sorry if you feel ignored here.
It is MY fault because I started to ask Sam as the Doctors said she did not have the syndrome. I was afraid to loose Sam and wanted to tell her that she had a diagnose when having one antibody positive twice with 12 weeks between the bloodtests.
Like APsnotFab said we shall not loose the thread of the question we have started on before we have answered that question.
I can all the same say, that out of all this, you have got exstremely good advice from APsnotFab who knows what she is talking of here on our site.
Hope you will
No ma'am it wasnt really you. But thank you. And i do appreciate the time apsnotfab took to tell me all that and you as well. If sami is gone iam too.
Thank you
KellyInTexasAdministrator
Not at all- it's very complex. Just trying to make sure you are safe! Not about to clot some where very dangerous!
Trying to establish if you have had the three tests, if so, by whom. There is a very specific criteria, but even then that can be a bit tricky.
It's very confusing, be patient. Livido can look different on different patients. It is a symptom.
Let the administrators guide you step by step. They are very kind, I assure you. Often Hughes overlaps with other auto immune illnesses so the threads get tangled together.
Thank you no two patients are the same and ive been a member since idk 2015 im here for insight not a diagnosis that i already have.
Hi thank you very much for the information. Ive had my thyroid tested i have hypothyroidism and take synthroid everyday. The picture i posted is my rash at its worse. It looks just like the link you posted just darker on bad days. I was told by dr cathy chapman and licensed rhumy that it was livedo and took a tiny asprin pill well a few of them but stopped.
I was pn plaquanil for the mctd dr took me off because my eye sight was being effected and when i asked last time hr yelled at me for 7 min infront of my then10 yr old daughter who recorded it. I havent seen a dr since. So thats why its not cool to treat someone like i was here. I trusted enough to open myself up to be attacked again. But ill take that to my PTSD group. Thank you sami for sticking up fpr me 😆 and Apsnotfab thank you for caring before judging 😆
T3free 111ng/dl (71- 180)
T3 UPTAKE 23% LOW (24- 39)
T4 7.3 UG/DL (4.5- 12.0)
TSH 4.220 (0.450-4.500)
Thats my fault i actually started on sami13 post and then made my own
Thats exactly my dosage it was 200mg one once a day. I remember i had vision issues from it and was having to see a eye doctor alot to monitor it it was a while back. I did find a new doctor who thankfully will see me tommorow at 1pm even though ive rescheduled 2 times before. I should have reported my other doctor i wrote up the report and never mailed it im not sure why.
Also im on synthroid 0.05 once a day
I got ahold of the actual lab results
Anticardiolopin Ab, IgA. < 10
igG. <10
IgM. <10
Antiphosphatidylserine IgG 1/ IgM 2
Antiprothrombin antibody,IgG 6
APTT. 32.2 (HIGH)
Beta 2 glycoprotein I, IgA <10/ IgG <10 / IgM <10
DRVVT screen seconds, 35.9
Hexagonal Phospholiid neaitral 24 (HIGH)
Platelet neutralization 0.0
It's actually 4 pages so if any infos missing I can edit it in there was a quote a bit of comments on the lab results.
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