Anybody been diagnosed with MS and then found to have APS instead?

[mitzygaynor]

Has anybody received a diagnosis of MS from brain lesions seen on an MRI and then be diagnosed with APS instead?

[jetjetjet]

hi -mitz every time i ended up in ER with problems from my aps the neurologist on duty would come to me and say ---- we tought at 1 st you had MS. some knew of the aps ,but it was right on my paperwork and records--- i had one i told her i had aps and she repleid i don't know of that but i don't think you have ms !!! she wanted to set up an appointment to discuss the MS i dont have ?????? i told her no thank you if you can't grasp i have APS not MS than i think i will be wasting my time and yours -- i'm sure you are a good Dc. but not good for me -- have a great life . i think that this happens quite a bit -------------------- jet

[sharonap in reply to jetjetjet]

i was tested for MS (lumbar puncture) before I was diagnosed with sneddons and aps xx

[mitzygaynor in reply to sharonap]

Hi Sharonap

Thanks for replying.

Would you mind sharing what your initial symptoms were?

Did you have an MRI?

Are you in the U.K.?

[mitzygaynor in reply to jetjetjet]

Hi

Thanks for replying.

Are you in the U.S.? I'm in the U.K.

Did you ever get an MRI and what did it show?

What were your symptoms and are they better now?

[Bagpuss01]

I was tested for both, as apparently there is a very fine line between the 2. I also had TIA on the brain, but apparently a certain blood test should rule MS out. Don't quote me on this but this is the info I was given at Guys Hospital. Good Luck and take care x

[mitzygaynor in reply to Bagpuss01]

Hi Bagpuss

Thanks for replying.

Did you get an MRI and what were your symptoms?

I'd be really interested to find out what the blood test is to rule out MS??

[Bagpuss01 in reply to mitzygaynor]

Yeah, i did get an MRI, this is we're they found 6 TIA's. I am unsure of the blood test. My symptoms were pain in the head, migraine symptoms, tiredness, I then blacked out. I see Dr Brean at Guys in London, and it was er that advised me MS and Hughes are very similar. I wish you all the best. Take care x x

[Jane-Martin]

Hi. Yes, I was dignosed my the top MS neurologist here with MS from my MRI. The next day as I was still reeling from the shock, a Rhumatologist passed my bed and upon noticing my legs covered in Livedo asked if he could see my blood tests and MRI. He said it wasn't MS but APS. Both these guys argued with each other for a long time over that one. I went with the Rhumatologist!

[mitzygaynor in reply to Jane-Martin]

Thanks for your reply Jane. Are you in the U.K. ?

Did you initially have APS screen done?

[mitzygaynor in reply to Jane-Martin]

Hi Jane would you mind sharing what your symptoms were and what was on your MRI please?

What treatment are you on and are you feeling better?

Many thanks

[Jane-Martin in reply to mitzygaynor]

Hi, Well my symptoms had just been getting more severe over many years, so many to mention. Reason I had gone to this hospital at this time was because I had been discharged from another following a stroke, had been in intensive care for 3 weeks, came home wanting to die, I coudnt cope with the migraines and all the specialist did was put me on more drugs. I was just so ill and after so many years of being ill, I had come to the end of my coping skills. This was really my GP's last call. I went in under the best neurologist he knew. A guy who is well known with dealing with MS patients. He did another MRI and saw several white spots and evidence of a few previous strokes. My numbness he said wasnt just my strokes, but the MS. He couldnt understand the migraines, but thought I would get better under his treatment. The Rhummy strongly disagreed and said the white spots were APS related and so were my strokes. He looked at blood tests that had been done then and at the previous hospitals. I had so many blood tests over the years and ALL showed I had positive tests for APS. These tests went back years. I live in South Africa at present, But even tests in Uk when I lived there had shown a concern, but they were all dismissed by my GP there. Here, I was told once I had mild Lupus and shouldnt worry...thanks doc's, you all almost killed me!....I am now on warfarin ( migraines under control now because of this little pink guy) ecotrin and Plaquenil. I wasnt feeling great, but far better able to manage because I am no longer getting migraines, but the fatigue and joint pain is a huge issue. I have been put on every drug there is from steroids to Methotrexate, nothing reaally helped..... I am just in the forth month of some natural food supplements and I am actually beginning to feel I will get better. I am going to tell my story with these supplements soon, cause they really have made a huge difference...rather like warfarin...giving me back my life...I went to my best friends 50th birthday the other day and I danced for hours. A few months ago I could barely get up and down from a chair because of joint pain and stiffness..

[jean48]

Yep - I had MS for a few days and then my Rheumy called and explained that I had APs NOT MS.

[mitzygaynor in reply to jean48]

Hi Jean. Thanks for your reply.

Would you mind sharng how they diagnosed the MS?

[Leigha]

Hello,

I was diagnosed with MS, it showed as such on my MRI and I had the symptoms. spent almost 2 years in a wheelchair, although could walk short distance. This was apx. 20004-5 and 3 years before being diagnosed with APS. Somehow the MS symptoms went away and I started getting tia's and then had a stroke (not large, thankfully) in 2006. Strange, indeed. The doctors refuse to link the two and will not discuss the fact that I 'had' ms and now do not, yet I have the MRI which showed it. Bottom line, I believe the mystery of APS is indeed extremely confusing and somehow manifested itself through ms lesions on me. They were there yet are not. I have the evidence.

They know very much about APS compared to what they knew even 10 years ago, yet it is still a very mysterious syndrome which challenges the medical profession. For me, basically I am just told I am a very complicated case. They won't address what they don't know about, and I suppose I can't blame them.

All the best to you,

Leigha

[mitzygaynor in reply to Leigha]

Hi Leigha.

Thanks for replying. Are you in the U.K?

Would you mind sharing what your symptoms were and what was on your MRI?

How are your symptoms now and what do you take?

Thanks so much for your help x

[Leigha in reply to mitzygaynor]

Hi Mitzy,

I'm in the States.....

My MRI showed MS lesions and the diagnosis was 'degenerative disease'. Hard to remember it all now as it was 7-8 years ago, but my balance was so bad I could only walk with assistance or holding on to things, hence the wheelchair. Toe in walk. Jerk of left lower leg and arm. Migraine. Cognition difficulties. Swallowing problems. Extremely heat sensitive. Dizzy. Tremors. Oh, yes, seizure disorder. Still have the seizure disorder but it is controlled through medication and have been seizure free and drive.

The MS symptoms left as quickly as they came on, I was told this did not happen but it did. And, I started having TIA's. Would have up to several a week, but no one believed me because they were flabbergasted that the MS had gone. The MRI still showed white spots on my brain, but the lesions which define MS were not there. I am not using the correct medical language and am not going to the closet to go through all the MRI's and reports, so please bear with me and my words. In 11/06 had a stroke, but I was lucky. It affected not my walking/talking but I lost my artistic side, my ability to write well (was working on a novel) and other similar things. Then was diagnosed with APS in 1/08. Finally.

Because I have Low Factor VIII levels (means am a mild bleeder) I cannot take blood thinners. I do take an alternative drug, not approved, but it helps me. I've been mostly TIA free (maybe 2 or 3 a year) since 2008. My MRI's continue to show white spots but no MS and I have no MS symptoms. There is scar tissue, whatever that means. I do have a mild tremor left hand at times when very tired, but that is all.

I don't know the answers! Somehow I want to guess that autoimmune can travel through the body like a train out of control and with me it did that. I do take Tregretol and Topamax for seizure and migraine and trigeminal neuralgia control. The meds may be called something different in the UK.

I do have Livedo reticularis on my legs and arms and have had it since was very young. This to me is important somehow for tells me the APS has been with me a long time. Had miscarriage.

Sorry this post is so long. Hope I addressed your question. Let me know if you need any further info.

All the best!

Leigha

[MaryF Administrator]

It is well documented medically speaking that a percentage of patients who have MS turn out to have APS, due to the similarity of symptoms in the earlier stage of diagnosis, sometimes in rare cases people have been found to have both! Mary F x

[truckerswife822]

Yes I have been. I took what they thought at the time was a Grand Mal Seizure and then with an MRI diagnosed me with MS. I took shots for a whole year and then had another MRI and was told I was misdiagnosed. That I took a mini stroke and not a seizure and that I had APS instead. I currently am experiencing symptoms that have made me feel that they made a mistake and I do have MS but also have APS as well.