MS and lupus anticoagulant

[AngieRae]

Hello, I'm new here and have a question. Has anyone ever been misdiagnosed with MS and in fact had Hughes instead? Or, have both? Any experiences or information would be greatly appreciated. Thanks in advance.

[Manofmendip]

Hello and welcome.

There are certainly such cases where people have been misdiagnosed as having MS when they actually have APS and Prof Hughes has reported on such cases in his books and his blogs. I do not know whether people have been diagnosed with both MS & APS but I hope others on here will reply to you soon.

May I ask you a couple of questions please, which we ask many of our new members in order that we can help them better.

Do you have a diagnosis of APS/Hughes Syndrome or MS and, if so, who is managing your condition?

Where are you from?

Best wishes.

Dave

[AngieRae in reply to Manofmendip]

Thank you

I was diagnosed with MS 2 years ago by an MS specialist. I have 4 very small lesions on my brain and one small lesion at c4. I was suspicious of my diagnoses, but the neuro said it is a slam dunk case. He did not rule anything else out or test for anything

I have had daily headaches for several years lasting months at a time. They can't find a cause and no medication helps. Started to develop a slight malar rash so primary doctor tested ANA. It came back positive. Was referred to rheumatologist. She did a barrage of tests, but this time ANA was negative. They did, however, find a positive lupus anticoagulant. She also diagnosed livedo rash on my legs. She said no lupus and no Hughes because of negative ANA and no clots or stroke. My primary consulted a hematologist who also said no Hughes, but certainly if I have a stroke or blood clot I have it. I'm not really thrilled about waiting for that to happen, so I'm advocating for myself. My neuro won't discuss it with me. I am going for a second opinion with a new neuro end of next month.

I am from Portland, Oregon. I emailed Dr. Hughes clinic, and he was kind enough to email me back personally and direct me to this site. So, here I am!

Longer story than I anticipated!

[minnime63 in reply to AngieRae]

Hello, did they test you a second time for Lupus Anticoagulant? It normally takes two positive tests (about 12 weeks apart) for a diagnosis of APS. Perhaps discuss it with your new consultant. Good luck!

[Manofmendip in reply to AngieRae]

Thank you Angie

My colleague, Mary, has given you some good information and she will be able to tell you about seronegative APS, too. This is where a diagnosis is made on symptoms alone, such as your headaches, livedo when the tests are negative. Not everyone who has positive tests even has a stroke or clotting episodes.

Dave

[diane1428 in reply to AngieRae]

Well done. Love this site and it has actually stopped me from going mad. My GP actually has said my illness is not her responsibility. I have taken charge of it myself and feel so much better for it and for the site as it has helped me tremendously.

I thought I originally had MS as it is in my family, but then so is rheumatoid artheritis. I was terrified but 2 years later was diagnosed with APS and SLE. Have you had mouth ulcers, dizziness, almost seizures, miscarriage, migraines, I had them all for many years and then finally diagnosed myself and went to the doctors as said 2 years later positive diagnoses and finally im on medication.

Thank you HealthUnlocked for helping me.

[MaryF Administrator]

HI, there are cases of people diagnosed with MS and later on it turns out they do not have MS but instead Hughes Syndrome/APS, The lesions look very similar and there is an overlap of symptoms. I enclose an article and also to what is written about this on our charity website: dailymail.co.uk/health/arti...

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

and here are the blood tests which need to be done, please get them done in a facility where the samples will not hang around as they are a bit time sensitive.

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

Please let me know if anybody has diagnosed APS/Hughes Syndrome, and also where you are located.

MaryF

[designer16]

When I started to read your blog-she must be in the US. I live in California & I have battled the exact same things. I finally gave up & went to see Prof. Khastma & prof Hughes in London. I had positive blood test 20 years ago & then they were all negative. The U.S. Drs. Told me Hughes/APS went away. No it does not go away. They test for 2 proteins out of 50. The Drs. Here in the US do not like to put pts. On anticougulants because of logistics. Yes they have told me this. If you have a stroke or blood clot that makes it easy to treat you. Prof. Hughes told me to learn my body, best advice ever. The next thing is to stand strong don't be afraid to tell the doctor how you feel. Example ( I am not telling you to do this) if you take an aspirin do the symptoms get better. Do you feel better? Strawberries have solicitates, natural blood thinners.

Yes they thought I had MS but I have Hughes.

Best of luck designer16

[dar58]

In 2000 I was ANA POsitive and diagnosed with Lupus...but stangely enough it was a speckeled pattern which is indicative of mixed connective tissue disease. Approx 2002 I was diagnosed with MS, I have lesions on my brain and changes in the white matter. I underwent experimental chemo with an MS specialist which put me back on my feet but I developed a collapsed Aorta and needed emergency surgery to repair it. In 2005 while hospitalized I developed 2 blood clots and they had a Hematologist/Oncologist come in and she ran tests. I was then Diagnosed with APS and placed on coumadin. My life has had many ups and downs. I developed some painful lesions recently and on April 2nd I will find out if I have yet another auto-immune illness called Behcet's Disease. If she believes it not to be Behcets then I will have a biopsy taken at this time to check for cancer. While speaking to my Dr. she said she is seeing more and more people with multiple autoimmune or genetic illnesses. So, I guess I am saying it is very possible to have both. Having 1 of these illnesses is tough enough but having many is extremely difficult to keep all in check. It seems that if you have a flare up of one, the others start also. I am so very sick and tired of dealing with all this and at times I try to stay as busy as I can to try and lessen the depression. Darlene

[Lure2 in reply to dar58]

I understand that you have had a really difficult time with all those suggestions of autoimmune illnesses. Several diagnosed.

You, if anybody, should really need the best Experts ready to cooperate for you. Lupus could be APS and MS could be APS. The Experts have difficulties with us as we are very difficult patients and our body change during the years also.

One important thing is that we do not take too many different unnecessary drugs prescribed from different Experts who do not cooperate. Prestige among doctors exist I have noticed though I have only APS so far.

I am going to keep my fingers crossed for you on April 2 and that something good will come out of your meeting with the Doctor.

Please keep us informed how it goes for you.

Kerstin in Stockholm

[dar58 in reply to Lure2]

Thank you Kirsten, All these illnesses have been diagnosed with many tests. Such as the MS with MRI's and 2 times spinal taps because the 1st one was contaminated. The APS due to a few blood clots they did the lab tests also twice which confirmed it. The only one i have difficult believing was for Lupus, as I said it was positive with a speckled pattern which usually is mixed connective tissue disease.. I actually have 2 new Doctors and my primary Doctor herself has APS which makes things much easier for me as she knows the pain, the symptoms etc by experiencing them herself 1st hand. She has made a referral for me to a Rheumy that she sees about 200 miles from here that is well versed in all these illnesses. I am hopeful that once I see this new Rheumy he will be able to shed some light for me. Here in the USA its very hard to find Doctors(specialists) who knows much about APS. The worse problems I have seen is example: I went to my local Doctor due to having a retocele, cystocele and my pelvic floor had dropped, I developed the newest problem which is a large, painful, ulcerated lesion. He would not even examine me, instead he stated "I told you before there is nothing I can do for you,you need surgery and you are too much of a high risk with the blood clotting disease you have"!!! I was in so much pain that a friend drove me 130 miles to Pueblo where I met one of my new Doctors, this is the one I will be seeing on April 2nd. I am awaiting the Rheumy appointment to be made as all my records were faxed to him to read and then for his office to make the appointment for me. Depression has played its toll on me and so many times I have just wanted to give up. Then I think there has to be more people out there like myself that hasn't had the correct Medical Providers, so I push on in the hopes that something can be done to make life a little more bearable and worthwhile. Thank you so much for your concern, its very much appreciated. Sorry its so long winded but I needed to explain these difficulties.

[Lure2 in reply to dar58]

Itis so useful for all of us to hear all the troubles you have gone through. We learn so much from it. Thank you for letting us know!

I believe you will find a way out of it soon. I hear that you have the power and you do not give up on yourself which would be the easiest way for a short period.

Lucky (for you only) that your Doctor has the same illness!

Please let us hear how it goes for you.

Kerstin

[anniesensi]

Hi Angie,

I hope I can be of help, I was diagnosed with MS in 2004, confirmed by lumbar puncture and MRI scanning. I was diagnosed with APS, Lupus 'like' syndrome and pernicious anaemia in 2011 when I developed arterial clots and PE'S. At that time a stroke was discovered that had happened in 2010 which had been dismissed in hospital as an MS relapse!

All the best to you, ask any questions x

[AngieRae in reply to anniesensi]

Anniesensi,

Did they undiagnosed the MS the, or do they think you have both still?

[AngieRae]

Thank you so much for all your replies and feedback! It is so much appreciated. I have not had the 2nd lupus anticoagulant test yet because none of the doctors think it is important enough to do it! It is so frustrating. So far the doctors are not concerned about it unless I have an "event". Really? Not going to wait for that.

Headaches every day of my life are about more than I can handle, especially when taking care of a 3 and 5 year old. I have not had any "MS" progression in 2 years which is not the norm.

From what I have read from Dr. Hughes' publications, the spinal tap can have oligoclonal bands in it with Hughes. It is not specific to any disease, it just shows inflammation in the nervous system. So be careful when reading too much into the spinal tap. MRI lesions with Hughes, MS and lupus all can be indistinguishable. They even did a blind study with radiologists and they could not tell the difference!

I had severe preeclampsia about 6 years ago, and my body has never felt healthy since. The doctors said because I was able to stay pregnant until 37 weeks in the hospital on complete bedrest, I don't meet the criteria for Hughes. For that you have to deliver at 34 weeks. Hmm

I know it's probably likely I have MS, but there is a possibility I have Hughes which can be treated. Why not at least try! If this new doctor doesn't work out, I will find the funds to go to London. Dr. Hughes sounds so compassionate!

Another question...does Hughes cause extreme fatigue? That, headaches, and livedo are really my only symptoms.

Thanks again

[AngieRae]

Oh, and I started taking a baby aspirin everyday for the last 2 weeks, but haven't noticed a difference.

[Margot]

Hi I have been diagnosed with both and both neurologist and rheumatologist won't budge on reconsidering the situation, pretty bloody miseable

[Lure2]

Yes those two illnesses are often mixed togheter.

If you have a Neurolgist who do not understand what APS is about - too thick blood that has to be thinned and also a Rheumatologist who is not specialized on APS as so very few are, it could be difficult.

Some have both illnesses but very few. I suggest you get a Specialist of APS. I know very little about your situation but that could be a first step perhaps.

Hope I have understood your situation.

Best wishes from Kerstin in Stockholm