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Going out of my mind! Misdiagnosis?

OMG I think I’m going out of my mind!

I was diagnosed with MS in April privately but have now switched back onto the NHS and am going through all the same tests before starting treatment. I was a bit miffed at this, but yesterday decided to google the MS ‘mimics’ and came up with Hughes Syndrome - does anyone know about this?

This was the possibility that really struck a chord with me as I have a history of fertility problems linked to ‘sticky blood’. I was diagnosed with Impaired Fibrinolysis after a miscarriage and repeated failures of IVF. In the end I did have two natural pregnancies for which I had to take blood thinner (clexane) injections to 34 weeks gestation. I gave birth prematurely at 34+5 weeks and 36+2 weeks - another side affect mentioned in the Hughes Syndrome website!

Am I clutching at straws? I know I had only basic blood tests before diagnosis but am now having more specific and detailed testing…so I guess I have to wait and see. I have never wanted to be diagnosed with something so much!!!

Emma x

Hi Emma, welcome to the forum. happy2

Do you mean that before you were diagnosed with MS privately that you only had blood tests? 

MS cannot be dx by blood tests. You would normally have an MRI scan of brain (and sometimes spine) and show lesions that are separated in space and time (which means that leasions show in different parts of the brain and have appeared at different times). If they are still unsure, they sometimes do a lumbar puncture. They put the results of the MRI and the LP together with your symptoms, and progression of symptoms, and dx (or not) with that information.

If you didn't go through this process with the private doctor than I think you could certainly question your dx. If you DID have those tests and lesions were showing and you had a positive LP then it is likely to be MS. 

I don't know anything about Hughes Syndrome except that the symptoms can mimic MS.

Like a lot of these things unfortunately dx can take ages and nobody on here can tell you if you have MS or Hughes. You're going have to be patient and wait for results of tests. You're not going mad though and it does seem as if Hughes is a possibility especially if you haven't had all the correct tests for MS.

Hang on in there. Hope you get some answers very soon.

Pat x happy2

Sounds like a definite possibility Emma. Please don’t get your hopes up too high though, just in case. You might be able to get your GP to do the blood tests - quicker than waiting for a neuro!

Fingers crossed!

Karen x

Thank you both! I did have an MRI and obviously a fair bit of clinical history before diagnosis, but I never went into detail about my history with the blood problems. The neuro knew I had IVF but never asked anything else and it never occurred to me to say anything! I haven’t had a lumbar puncture though.

I know it’s a long shot so I’ll not be getting my hopes up, but this would then explain basically every illness and problem I’ve had in the last 10 years!!!

On the other hand, my MS diagnosis was definite enough to get my critical illness insurance to pay up.

Thanks again x

I hope you haven’t spent the money? HS can look like MS on MRI.
What a situation! I really feel for you!
Kx

We paid off the mortgage!!! Have no idea what the situation would be in the event of misdiagnosis, but I guess worst case scenario we’d just have to take out a new mortgage.

I’d rather have a mortgage than MS!

 

Hi Emma,

 

Ref Hughes Syndrome see http://www.hughes-syndrome.org/  and http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=736

 

You need a test for APS Antibodies that your GP can arrange but this test is only 80% correct I believe.

 

As Karen has said don’t get over exited but you do look a good candidate but I suggest you talk to someone at the Hughes Foundation.

 

I know it’s a funny thing to say but I hope you have HS.

 

George

About your mortgage; it may be HS is a critical illness also?

 

George

 

As Pat says this is the correct procedure for diagnosing MS; http://www.mult-sclerosis.org/diagnosingms.html  the MRI is paramount but lesions do show up in HS as well as MS.

 

As I say talk to someone at the Hughes Foundation.

 

George

Thanks all. I’m trying not to get excited! I’m 90% sure the relevant blood tests are now being done (my new neuro ordered everything when I explained my history - they took so much blood from me the nurse was worried about me driving myself home!). I have a follow up in a month or two (second MRI first on Tuesday) so I’ll discuss it then.

I’ve just had a dig through all my old paperwork from the IVF days, but it says nothing more than Impaired Fibrinolysis requiring clexane. It was solely being looked at from a fertility and pregnancy point of view.

On the plus side, where I am now is the worst case scenario (now it’s been diagnosed anyway), so really things could only get better with this possibility.

I called the insurance company for advice on the claim and they said they wouldn’t reclaim the money as the claim was valid at the time. Big relief as I didn’t fancy unravelling a fully repaid mortgage on a seriously low interest rate, I had visions of having to borrow the full amount at three times the interest rate we had and being unable to afford the repayments! Then again, a mortgage is a small price to pay not to have MS.

Just got to hope that my previous neuro was wrong!

WOW! Amazed at the insurance company!

How gobsmackingly good would it be to find out that you actually have a treatable condition AND have your mortgage paid off?!?!?!?!?!

I know I shouldn't encourage you to get too hopeful, but I've got everything crossed for you!

Kx

 

 

Hi Emma

Ive got everything crossed for you. Good luck!

Paula xx

Hi again Emma

Just read about Hughes syndrome and I will be asking neuro to do a blood test for this! Very similar to MS. Thanks for letting us all know about it!

Paula xx

Emma will keep all things crossed for you also. Let us know what happens.

Reemz

X

Hi Emma, St Thomas's in London is the best place to be seen for suspected Hughes Syndrome. I think part of the criteria use to be five misscarriages or more.

I watched a TV programme many years ago and various people who had been diagnosed with MS were actually found to have Hughes Syndrome and one of these was a man. Some of them had even tried betaferon but when they were given the correct treatment for Hughes some of them did really well. Saying that if it has gone on too long not all of the disabilities are reversible.

Keeping everything crossed for you.

Jacqui

xx

Thanks everyone for your support. Yes, this would definitely be fantastic news but I’m trying to keep level-headed as the odds of a misdiagnosis are low. I’ll wait until I’ve had my next appointment to see exactly what’s been tested and take it from there. Fingers crossed! :slight_smile:

Love to all x