I might not have MS after all

Everyday living
1

Hi All,

Some pretty startling news here.

I was recently in hospital with chest pain and trouble breathing. They did a CT scan on my lungs and found I had multiple pulmonary embolisms in both lungs so I was rushed off to the High Dependency Unit and started on Heparin and warfarin. It is also looking as though I may have had a rare form of stroke at the same time as the pulmonary embolisms as there was strange blob on my brain CT which the radiologist has said is a venous sinus thrombosis. I have to have an MRI to double check this one.

After a whole heap of blood tests and going back over my medical history it is looking as if I may have been misdiagnosed and it is appearing as if I have Antiphospholipid Syndrome (also known as Hughes Syndrome) rather than MS.

This can cause lesions on MRI due to ischemic damage from TIAs and is characterized by repeated miscarriages (I had 5 between my two children) severe migraines and DVTs or pulmonary embolisms. In some people it also causes symptoms really similar to MS.

I know Hughes Syndrome has been talked about on here before as a possible differential diagnosis for MS and people have said it is really easy to treat but actually that isn’t so. It is bloody complicated and the disease is scary as I have about a 25% increased chance of dying with this even with treatment.

I am waiting for more blood tests a present but will have to stay on Warfarin, probably for life, and I am also having to inject myself twice a day with heparin as my Warfarin levels are not staying in the therapeutic range. So with twice daily injections, finger prick tests at the GPs every 3 days and more blood tests and chest Xrays, CT scans, MRIs, haematologist appointments and neurologist appointments I am starting to wish nobody had ever heard of Hughes Syndrome!

So I may not be around here much any more as I might not actually have MS. TBH I am pretty angry that after 5 years in limbo and being stuffed around and then finally diagnosed with MS 4 years ago it turns out that the doctors still got it wrong.

I’ll let you know what happens when I find out more. For now though I am in a right old muddle and really don’t know what to make of it all.

Cheers,

Belinda

2

Hi Belinda,

Sh*t! To put it mildy.

I know you knew about Hughes syndrome, and thought your healthcare system would as well.

I got tested for it automatically, and thought everyone in developed countries who showed signs of MS would be too.

I’ve always looked with envy towards your system, and thought they seemed to be ahead of ours, and that you got offered the latest stuff without so much hassle, and so on.

But now it looks like they could have been WRONG? OMG, I’m stunned. I can’t imagine how you must feel.

This seems almost a schoolboy error, as Hughes syndrome is high on the list of differential diagnoses. How come nobody has thought to have looked for it before now?

I’m under no illusion that a rediagnosis of Hughes syndrome would be a “get out of jail free” card - obviously it’s still a serious, chronic condition that needs managing, and it can’t help that it’s been left unmanaged for years already.

I dunno what to say. You’re a well-informed poster, and I’m sure took an active interest in your own diagnosis and treatment, and were not the sort to be fobbed off. If it can happen to you, what happens to people who go in knowing nothing, asking nothing, querying nothing?

I don’t know what to wish you for the best. I just hope that whatever it is, they get to the bottom of it soon, embark on the RIGHT course of treatment, and that you can come to terms with whatever the future holds.

Having dealt with the assumption you had MS for years, I’m sure you will deal with it too, if it turns out to be something else. And perhaps life would start to get brighter if you were being treated for what you DO have, and not for a misdiagnosis…

I hope so.

Tina

x

3

Oh belinda…for chuff sake!!!1

I can hardly believe what i am reading. i know you and i have been through the wringer with so many neuros poking, prodding and doing this test and that test, waiting for results, having a variety of dxs shoved at us.

i also wondered if i might have Hughes at one time and was tested for it.

But, after so many years of it going undetected, with the damage already done to your body, it wont be easy to treat, i know.

Belinda, not having MS doesnt mean you have to leave this site. Look at me…I`m still here, welcomed by all to stick around.

This site has become such a big part of my life, that i just couldnt leave!

I hope your health improves and that we`ll still see your name on threads etc.

Poor you. Not fair…just not chuffin` fair!!!

much love,

Pollyxxxxxx

4

Oh Belinda, poor you, I am so sorry you have been so poorly. It sounds like you’ve really been through the wringer! Multiple PEs and a stroke. It is really awful. As I read your post and saw that it might be Hughes syndrome I was momentarily pleased as, like others, I thought it was easier to treat than MS. But that appears, from what you are saying, to be a fallacy. I am so sorry. Please stay on the forum - you are always a bright spark to lighten the day! I do hope you get some effective treatment, start to feel better and have some decent support. Thinking of you, Teresa xx

5

DON’T YOU DARE GO ANYWHERE!!!

You are one of the most knowledgeable, objective and sensible members of this forum and we need you!

Please don’t go?

xxx xxx

6

Oh Belinda so sorry to hear your news. Bloody hell what a bolt out of the blue!

I really hope they manage to treat it and things improve for you though it all sounds pretty daunting.

One thing I would like to say to you Belinda, PLEASE don’t leave us because you don’t have MS. What the heck… we all have these difficult damned conditions and you have been part of the family for so long it would be terrible if you left us. Like Poll, you will be an honorary member!

It does sound very scary. Try to remember when you first thought you had MS and how scary that was, and how after a while you got used to it and just got on with life? I am hoping that the Hughes dx with be the same for you… much less scary when you know more and have contact with other people who live with it.

Thinking of you Belinda,

Pat x

7

I forgot the…

HUGS HUGS HUGS HUGS HUGSHUGSHUGS HUGSHUGSHUGS
HUGS HUGS HUGS HUGS HUGSHUGSHUGSHUGS HUGSHUGSHUGSHUGS
HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS
HUGS HUGS HUGS HUGS HUGS HUGS
HUGSHUGSHUGSHUGS HUGS HUGS HUGS HUGSHUGSHUGSHUGS
HUGS HUGS HUGS HUGS HUGS HUGSHUGS HUGS
HUGS HUGS HUGS HUGS HUGS HUGS HUGS HUGS
HUGS HUGS HUGSHUGSHUGS HUGSHUGSHUGSHUGS HUGSHUGSHUGSHUGS
HUGS HUGS HUGSHUGS HUGSHUGSHUGS HUGSHUGSHUGS

Karen xxx

PS If this doesn’t work I will cry!

8

Thank you everyone.

Poll, you and me both with weird MS but not MS diseases, huh?

Karen, please don’t cry and I LVE your hugs. Amazing how you did that

Pat, Tina and Teresa, thank you for your encouragement. And I would like to stay on these Boards. I would miss everyone so much

At the moment it is just one day at a time and trying not to freak out too much. And reading, reading, reading. Sooooo much to learn all over again. Sigh.

B xxxxx

9

Oh Belinda,

I am obviously one who thinks it is far better to have HS than MS. If found in the early onset of the complaint I’m sure any dire consequences can be alleviated.

I can remember reading an article in the MSRC Magazine ‘New Pathways’ saying that a person in America who was diagnosed with MS for 23 years turned out to have HS. Since taking blood thinning treatment after 6 months has almost returned to normal health.

Yes; I know it is anecdotal and third hand heresay is not worth a light but it is so unlike you to think negative. You probably have but look on the HS website http://www.hughes-syndrome.org/

Stop feeling down; now they know the real cause you can now receive the correct treatment. I can understand why the medical profession does not make an APS Antibody test mandatory as it is only 80% successful but with your miscarriage problems that must have been devastating; I cannot understand why this did not send alarm bells ringing with some Neurologist.

Please think about becoming the knowledge on here about HS. Even if you can stop one person from the wrong diagnosis it must be worth it.

You are going to be fine.

George

10

Hi George,

I am feeling down because I am still recovering from the shock of nearly dying from PE’s and having a stroke. Not things that kill you with MS. So yeah, I am not feeling very positive at the moment. And yes, I do know the story you are referring to but I am also in touch with other people on an APS Forum and their stories aren’t nearly as positive. As in so many situations the bad news and scary news gets shoved under the carpet.

It is the same with MS. Look at all the news coverage of people running marathons or climbing bloody Mt Everest but not much in the news about all of the people slogging away day after day battling fatigue and pain and incontinence.

As for my miscarriages they were over 25 years ago so Hughes itself had barely been discovered back then and therefore it appears I have had it for about 30 years or more. So not exactly an “early onset of the complaint”.

I am now on the correct treatment but it isn’t as simple as just taking Warfarin. Keeping the levels in a therapeutic range isn’t as simple as just popping the correct dose of pills. What you eat, how hot it is, how much you drink, other medications you take and many other factors can change the effectiveness of the Warfarin and if I drop below a therapeutic level not only do I feel really ill with all my so called MS symptoms reappearing but I have a reasonable chance of dying.

So forgive me if I am being “negative” and don’t patronise me by saying I will be “fine”. Hughes is NOT the get out of jail free card you seem to think it is. It is serious and disabling and, unlike MS, it is a life threatening illness.

Belinda

11

This is the second time and last time I will apologise to you. In fact I will keep my upbeat thoughts to myself.

George

12

OMG Belinda!

Been having a little break from the forum and i pop back on again and see your post.

What a shock!

How are you coping with this news? You must be in total shock. Its just unbelievable news.

We have spoken about BG12 in the past and your intolerence of the dmd’s. No wonder your body rejected the dmd’s!

My heart goes out to you Belinda. You have been so helpful to me on here - i would be so sad if you left as you give such good advice.

I hope you get the help you need and hopefully feel a little better soon.

Getting an ms diagnosis is life changing but to get a change of diagnosis after a few years must be overwhelming! I just cant imagine what you are going through.

You have made me think as well Belinda as i dont know if i have been tested for HS. If this can happen to you then it could happen to any of us!

Sending you hugs and everyone is here for you if you need us.

Best wishes

Teresa.x

13

What??? Where??? Woops… can’t see it. An apology? Nope. Still can’t see it…

14

Hi Teresa,

I wonder if that is why I am allergic to the DMDs? That is a really good point. I must ask my neuro. The one I am worried about is the Cladribine I was on as that permanently changes your DNA. Ooops

Thanks for your hugs.

B xxxxxx

15

No, No, No, Belinda … …

Please don’t jump!

Like George says - if you can stop even one person making a mistake, then you are still needed here. And we would miss you.

Geoff

16

Sorry to hear about this, but with any luck things may get better after you start getting the right treatment.

Take Care Belinda x

17

Hi Belinda, I was dx with APS before I was dx with spms and am also on warfarin which I have to stay within a certain level and tested every 2 -3 weeks. I have blood clots on my brain which a very astute doctor picked up on after one of many MRI’s. I understand your fears regarding it but now they know it can be controlled. I really feel for you having gone through all that you have. Thank goodness they found out. Take great care.

Janet

x

18

Hi Belinda

I am sorry that Hughes is not the’get out of jail’ card I had hoped it might be

You are one of the most wise, most knowledgable, most sensible people on here so please stay with us. So many people have benefited from your advice in the past and I am sure many more would in the future. Anyway, I would miss you lots and lots and lots if you were to go.

Sending lots of (((((((((((((((((hugs))))))))))))))))))))), almost as many as Karen

Really hope that when your medication is sorted that life improves considerably for you

Anne x

19

Hi Belinda,

so sorry to hear that,

you must be in shock and so angry with it all, just hope that now you have this HS diagnosis,that you will get the right treatment.

((((((((((((((hugs)))))))))))

jaki xx

20

Hi - just want to add my hugs and love to the others - the amazing hugs post from Karen says it all (bet she whooped in the air when it worked!!) What a shock to your system, and it’s certainly not a walk in the park differential diagnosis at all.

Thinking of you hugely

Debx