Hello all,

Some of you may remember me from 2007-2008? I still read the forum posts and occasionally chime in.

In 2007 I was diagnosed with MG then in 2008 that diagnosis was questioned and then in 2009 was completely removed and my then neurologist suggested to all the drs I had contact with that I had somitization disorder.

After a lengthy battle I was diagnosed with Ehlers danlos syndrome type 3 (hypermobility) and autonomic nervous system dysfunction.

However I am now possibly back on the road to being diagnosed with MG.

In May I noticed my eyes were acting weird. My peripheral vision would slide down and then pop up like a roller blind. When I saw my consultant I mentioned it to him and he did a quick eye exam and discovered I couldn't track moving objects without having nystagmus (jerky eye movements). On 10th June I saw my gp and he did a more extensive eye exam and my nystagmus was even worse and was causing me to blink wildly. Since 10th June I have had my ptosis return full on. I get about 30 minutes to a couple of hours without it each day.

I have taken 30mg of mestinon and as usual the ptosis is resolved and the nystagmus settles a bit. However it only lasts about 2 hours and due to various medical problems I really can't take mestinon due to the problems it causes me.

Earlier this year I had swallowing issues - couldn't swallow or I was choking. So much so I had to see a speech therapist and now have a thickening agent to add to liquids to stop me choking. This was blamed on EDS as its known to cause these issues. However although EDS can cause double vision - which I have badly, it doesn't cause nystagmus or ptosis.

I must also add my ptosis resolves if I apply ice to it.

I see the neuro opthalmologist on the 16th of this month and I'm guessing I'm going to be back at the neuro dept shortly after that.

So I'm back and maybe I will finally get a diagnosis as I obviously have something neurological going on.

I apologise for any mistakes in this thread, my eye sight is poor and I'm battling the auto correct as well.

Thanks for listening

Rach x

Good luck with your diagnosis. Did they previously do any ACH or MUSK antibody tests or a single fiber EMG? Do you have any general muscle weakness in your extremeties? Are you affected by the heat?

Please let us know how things progress. Are you going to a neuro muscular specialist or a local neurologist? If you are not satisfied with your diagnosis/evaluation, I suggest seeing a neuromuscular specialist at a large teaching hospital where they see MG all the time. Also since you have so many eye symptoms, it may be faster and easier to get a diagnosis from a neuro-optomologist.
Good luck,
kathie

Hi Cait,

I have generalised muscle weakness and have had since 2007 - however that's a cross over symptom and has been attributed to EDS.

I've had all the blood tests, done at least twice between 2007-2009. I have also had 4 emg/Sfemgs done during that time as well. All have been negative.

However all the eye symptoms are much much worse than they have ever been. They have rapidly deteriorated over the space of 8 weeks yesterday I had breathing problems so had to resort to taking mestinon and I've been paying the price ever since. It resolves my symptoms I just don't tolerate it due to other medical problems.

I am seeing a neuro opthalmologist on the 16th, every neuro opthalmologist I've ever seen has told me without a doubt its MG. Its the neurologists that say it isn't because I fail the diagnostic tests. However those of you who are knowledgeable about MG will know that up to 20% of MG (generalised ) will be negative on all tests and around 50% of those with ocular MG will be negative on the tests.

I've seen the UK expert and I don't rate him, not because he didn't diagnose me but because he lied and made out I was mentally I'll when in fact I was suffering from a genetic condition that he knew nothing about, despite my blood pressure reading at his clinic of 80/50 and a pulse of 54! Apparently I can manipulate my pulse and blood pressure better than a yoga master!

I just thought I would pop in and say hi to those of the old guard that know me and give them an update and say hello to all the new people who I'm keen to get to know.

Thanks
Rach x

thanks for the update. I am double sero negative too, but my SFEMG was positive for MG. If you cannot tolerate mestinon, what course of treatment were you hoping to pursue - steroids, IVIG, plasmapharesis, non-steroid anti-inflammatory? You may want to read up on them before your visit. I am sure they will want to put you on a treatment regime.

From posts, it seems the MGers in the UK have a harder time with diagnosis and treatment. Try not to be dis-heartened.

Good Luck and let us know how you make out. Other MGers on the site may be able to help you sort out the treatment option.
kathie

Hi cait,

Thank you for your reply.

I have no idea what treatment they would want to pursue. I've done the steroids before with limited success - I ended up 5 stone heavier (5 x14lb ) and a thick blonde moustache and a hump on my back.

No treatment is without its drawbacks, I would just like my sight back. Its been extremely frightening and confusing for me.

As you can probably imagine you worry about what could be wrong.

Thank you
Rach x

I bet many of us double-seronegatives have anti-LRP4 antibodies.

http://www.ncbi.nlm.nih.gov/pubmed/21814823

Abby

Hello Rach, and welcome! The UK lost (we all lost) a champion of myasthenia gravis when Prof Newsom-Davis died in 2007. He put MG on the map.

http://archive.is/CAvAU

Hi,

I think you will find it was Angela Vincent his cohort who made many of the breakthroughs with her work in the labs at John Radcliffe hospital. But then why would a woman get any credit lol! (Sorry for the sarcasm!)

I've met Angela and she's lovely and a dedicated scientist.

Thanks for the welcome, I've been hanging around for years!

Rach x

Rach, I confess that I had forgotten all about Vincent! Shame on moi! Thanks for the reminder!

That's OK!

Many of the women here will recognise this one!

"Behind every great man is an even greater woman"