[Raglet]

http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=736

Just wanted to comment on the article posted by Clare (thanks Clare!). It's a locked thread, hence me starting another thread.

I am just wishing my APS was as easily 'cured' as Dr Hughes seems to think - I haven't done any leaping out of my wheelchair, my APS is something that needs continual monitoring and i am endlessly being checked for more clots/strokes.

The idea of everyone being magically cured just because they are dx has always made me giggle after my experience of the disease.

oh well, hope you're having a good day

raglet

 

[cath]

Raglet,

Having just read throught the whole article I can see no-where that they say that APS can be cured. Sure, some patients had great improvements in their health once treated correctly, but that is different from cured.

I was under the impression that your mobility and ballance issues were primarily from CNS Lupus. This is of course a very differnt pathology than APS. Certainly I don't want to minimise your difficulties, but there are many people for whom life after diagnosis and treatment is better than before, and for you too - who knows - with your aggressive disease course you may well have died long before now without treatment, and thank goodness we still have you with us:blush:.

I do agree that to say APS is a less serious diagnosis that MS is inappropriate. Catastrophic APS is often fatal - as the article also mentions. And some people live long near normal lives with MS. So I think it is unfair to wish someone APS instead of MS. No-one in their right mind wants either.

The point is - better the right diagnosis and the right treatment than the wrong one.

Wishing you lots of good days:hug:

X C X

 

[nicky00]

I have a question about the brain lesions that can be found in the brain of someone diagnosed with MS. Im hesitant in passing on the APS info until I find out if having brain lesions tips the balance in it definately being MS as an additional symptom towards diagnosis. My best friend has MS and also another person I know in Vancouver.

Ive seen an MRI picture of the lesions which although appeared after a longish time into the disease diagnosis were a cliching mark back then ( over 10years) for MS.
I know that not all people with MS have lesions.

Anyone with APS with brain lesions shown from an MRI scan?.

Nicky

 

[Raglet]

Actually I have damage from both diseases, but it is generally the cnslupus stuff that I moan about most ....

I have cerebral hypoperfusion, which is part of my APS.

I am really just having some fun here, and 'cured' was likely an overstatement. But the article does say

Like MS, Hughes Syndrome can affect mobility, memory, the speech and the nervous system. But the differences. Hughes Syndrome is easy and cheap to treat.

Ok, it doesn't mention how successful the treatment is, but a reasonable assumption would be that treatment would be successful.

It also says (re. St Thomas's)

Doctors there were seen numerous patients who had been told they had MS and were confined to a wheelchair having lost the use of their legs. They were subsequently re-diagnosed as having Hughes Syndrome. Within weeks, and in some cases days of starting on the blood-thinning drugs they were out of their wheelchairs and walking.

again it says

The study makes us feel very strongly that there is a group of MS patients who in fact have a different disease which is treated totally differently and very successfully.

But, I don't really have anything to prove, honestly I am really just having a bit of a laugh about me and my wheelchair. And to be honest, I walk a lot too with crutches and walker, so life is definitely not too bad.

Also still on far to much pred which is why I got such a bee in my bonnet about this - slightly manic downunder


cheers

raglet

 

[Raglet]

Nikki, totally depends on the type of lesions that a person has.

There is no risk in passing on information about APS because APS is dx by antibodies. A person has to have the antibodies before being dx, so it is just a matter of having a blood test.

Only a small number of people will turn out to have APS as compared with the number that really do have MS.

hth

raglet

 

[Maia]

The article also states:

Once the syndrome is diagnosed, aspirin, or anticoagulants such as heparin and warfarin, produces a dramatic reduction in symptoms in 80 per cent of patients, he said.

This leaves 20% that do not get a substantial reduction in symptoms. They most certainly are not saying that it is curable and always easy to treat. However, it is undoubtedly true that there have been some lucky individuals who saw a great improvement in their symptoms once started on anticoagulation therapy as well.

When you are reading text, it's easy to personalize things & interpret them depending on your current mood. The way I read the article is that if you have been diagnosed with MS, and have some symptoms in common with APS patients (headache, miscarriage, stillbirth, etc.), then it's worth a cheap blood test to be tested for APS to ensure you're getting the appropriate treatment that is most likely to help you.

 

[KarolH]

I was dx with MS in 2005 and have lesions on my brain.

Just 2 months ago I was told it is not MS but now Lupus.

If that is the case then I can only assume that CNS lupus can in fact cause lesions on the brain.

I also have APS too..............why not!

 

[Raglet]

umm, I said I am a lot of pred.

Don't know about you, but high dose pred makes me take things personally, which is why I said that I know i have a bee in my bonnet about this and I said that I am on a lot of prednisone.

I feel like i am being lectured here (quick, someone delete this)

cheers

Raglet

 

[Joandublin]

Hi Raglet :hugbetter:

Sorry you are on such a high dose of pred. I know the problems it can cause you :hug:

Actually I had a bit of a 'Lazarus' moment when I read the bit about people getting up out of their wheelchairs and walking. Not to make fun of this actually happening, but it did make me giggle a bit - just the image of it

Hope you feel better soon
Cheers
Joan:rose:

 

[nicky00]

Thanks Raglet

I will pass on the idea of having an antibody test to rule out or in.

Nicky

 

[Clare.T]

Dear All

I intended the post to be a resource because the MS/APS differential diagnosis is a recurring topic here. The thread was locked precisely to avoid having a jumble of umpteen posts over the years with a variety of questions that don't get proper attention and adequate individual responses, including posts from first time posters.
I am adding links as I find them.
I 'rescued' the first link from an old post but it was not really the best link to start off with given its somewhat simplistic, 'pop' tone.

Raglet I can well understand your reaction to it given the situation you are in. It has often crossed my mind that one of the inevitable shortcomings of support forums for individuals who have not responded well to the usual therapies and worst, run out of therapeutic options, who have extremely complicated disease or they can't access good doctors. They might not be able to afford the medicines or the therapy is simply not available to them where they live.

Diagnosing APS is not a matter of a simple blood test and this is even more true when it comes to differential diagnosis: a simple blood test does not rule out or in.

I can't offhand think of any instance when things are that easy! It is an extremely complicated business except in classic cases, which follow a text book progress, like lupus itself. CNS/NP lupus is very complicated

Some people have lupus and MS. As far as I know some people might have lupus, APS and MS. Dr Wallace's chapter in the Lupus Book shows very clearly how complicated it can be with the same sort of symptoms having several possible causes.
There are still lots of unknowns, differences of opinion and outright controversy.
I imagine that neurologists might feel threatened by the implication they might have misdiagnosed and patients understandably very unsettled.

The presence of antiphospholid antibodies does not of itself lead to a diagnosis of APS. If it did, everybody who has them could say they have APS, including myself. They can be found in a variety of other diseases including infectious ones and in some healthy people. They can come and go and levels can rise and fall. The sort of statistic we read is that one third to one half of those with lupus have them but only one third of those ever suffer from them. Their presence is one of the lupus diagnostic criteria.

Like lupus, the presence of autoantibodies alone does not lead to diagnosis of APS. There have to be symptoms. Their presence might well indicate risk of symptoms but that is not the same thing. Low dose aspirin with or without with Plaquenil are considered prophylactic.

I am sure there are lots of new developments, but it is almost impossible to access up to date medical articles these days.

Here's to better health for us all

Clare

 

[cad]

Hi All
It very interesting this article. I don't have APS or MS but when reading elsewhere on the site i found it quite alarming that as a type 1 diabetic i have 3 times more risk of getting MS.
This has already always been a bit of worry that i've had since being unwell.
I have had 2 generations of MS in my family, my great grandfather and great uncle died of MS before the days of effective treatment of the disease and i also have autoimmune problems in my mums generation.
I What the risk is with autoimmune diseases. :worried:

Anyway i can't spend my time worrying about what might happen, i have enought o deal with in the here and now!!! :lol:

The site in general had some interesting information on it.

Take Care All

Cassie