hi guys
 

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

:D 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"

Hi Rach! Welcome back! I do recall your posts and contributions from years past.

It's amazing to me how long it takes some of us to get the diagnosis. I hope you find some answers soon. I am also sero-negative and EMG negative (tho 1 EMG was questionable, instead of negative, when ready by a Mayo doc).

Have you had a tensilon test performed? In addition to a positive response to Mestinon, this is what really sealed the diagnosis for me. It was such an easy test to perform and they were able to objectively measure my eye deviation before and after the tensilon injection. I was surprised that this test wasn't performed during my first 7 years of symptoms. :eek:

I'm hoping your appointment on the 16th goes well. Do let us know the outcome.

Cate

Hiya,

I've had two tension tests one positive - ptosis resolved for a few minutes but the neuro said it wasn't long enough.

The second tension test was negative.

Did you know the tension test is banned in many countries, due to the use of atropine? Both times I've had the test administered they've had a crash team on standby.

Thanks
Rach x

I also had a strongly positive tensilon test to confirm diagnosis. My Emg was was questionable as well but I had only been off mestinon 12 hours before. A SFEMG was not done as my neuro said it was not needed. I am seroneg so far. Hoping to have a MUsk antibody test soon if my insurance will pay for it.
Sandy:o

Valeant Pharmaceuticals (purchased by ICN) quit manufacturing Tensilon, roughly, 3 or 4 years ago, or more. It's my understanding that some hospitals still have a few vials left. Tensilon was administered here, only in hospital.

Some of you may not be aware of this but with respect to the Tensilon test, patients were given a placebo, along with Tensilon. In this way, they could get objective results.

Atropine remains a very valuable drug, for one, in cholinergic crises...if they can figure out that it is in fact, cholinergic! That can get iffy.

When I had the tension test the first time they gave me atropine first then tensilon. M

The second one was done so that only the Dr that drew up the drugs knew what was contained in the syringes.

They did three one saline, one atropine and one tensilon.

My blood pressure and pulse were very low 80/50 and pulse 54. When given saline there was no reaction, when I was then given atropine my pulse accelerated to 140 BPM, and my eye opened. When I had then tensilon nothing happened, I was still feeling dreadfully I'll after the atropine!

However as I have a home blood pressure machine I know that a low bp doesn't cause my ptosis as I've measured my bp when it happens and its normal (low but normal) nine out of ten times.

Plus in 2007 I had ptosis solidly for 9 months ( I then started on mestinon) I couldn't have worked full time, delivered a litter of 9 puppies etc etc with a dramatically low bp without passing out constantly. Something I didn't do!

The last tension test I had was the first that hospital had performed in over 10 years.

Rach x

Hi Rachel,
Welcome back, I´m glad to hear of you but sorry for your condition which is giving you again some problems...
Neurological disorders are effectively giving some hard times to doctors whatever their specialty is!
I´m still around too, waiting for better time, with my Pred at 7 mg/d, 5 x 60 Mestinon daily and one PLEX every 7 weeks (next target 8 weeks...).
I quit Cellcept 18 months ago without any problem due to lack of effect.
Last month we took a week cruse from Venice to Athens for our 50th wedding anniversary and I was able to cope with all the sightseeing challenges but climbing to the top of the Acropolis in the heat was quite rewarding.
I wish you the best,
Maurice.

Fantastic...and congratulations on both counts. :)

And the celebration goes on, this week-end we have the canadian part of the family from Montreal (son, wife and 3 grand children) by us. They combined a wedding in Normandy in the step family to come all 5. Great!!!
Maurice.

...Maurice...Yours are experiences of a life time...! :) I know you will enjoy every moment!

Appointment today was a disaster.

Basically accused of putting on my ptosis and facial droop and all my eye problems. So upset.

Oh no! What happened? I was sure you'd get a good outcome with the Neuto-opthalmologist especially with the hot weather we are having here at the moment - I know my eyes are pretty droopy at the moment! What did he/she base that diagnosis on? How could, and more importantly WHY would anyone want to "put it on" ?!?!?! Especially as a woman - the facial and eye droop are a difficult sight to behold everyday when you know this is not how you normally look and definitely not how you would like to look!!

I am so sorry, you must be so upset and hurt right now - this treatment is just not fair :hug:

I am just beyond upset at the moment.

The guy was just rude and arrogant. The more tests he did the worse my eyes got to the point where he was having to hold both my eyes open.

Basically the attitude I got was "you're wasting everyone's time you haven't got mg get over it"

Kept making big dramatic sighs whilst filling out my notes. Said all my results contradicted each other? But didn't explain any further. Told me as I had been extensively tested for mg between 2007-2009 I couldn't possibly have it and the consultant I have for Pots would have to deal with it.

I am just crying as soon as my husband is out of sight because we are both so sick of this.

Just said he had no idea what is was and goodbye.

Whilst doing the exam he kept trying to catch me out by dropping the lid with ptosis and of course my eye closed.

What annoyed me more was the nurse who did the first exam noticed I'm holding my head funny to try and see and when I look at something close up my eyes actually move to the wrong side instead of going towards my nose they go outwards. But apparently none of that matters?

I give up, wtf am I supposed to do?

Rach x

Sounds like a real jerk. Sorry to hear this. I sure wouldn't go back to him. You're going to have to keep doctor shopping. This one is a lemon.

I am so sorry that you are going through this - how are you feeling today?

Is he basing his findings on a lack of a positive MG test? Did he discount it because you have been thoroughly tested and not produced a positive DESPITE having clear symptoms? Surely they would not have tested you so thoroughly if you were not exhibiting definite MG symptoms??

Would it be worth writing to Angela Vincent herself? Maybe explain your story and see what advice she may be able to give? You could be an ideal candidate for her research as you have clearly had many Doctors suspect MG but just unable to prove it? This is my Plan B if all else fails!

Is your GP willing to refer for a second opinion? How do we stand on out of country referrals? I sometimes think the UK doctors are too regimented and reliant on tests which even they acknowledge - are not 100% specific or sensitive! The Mayo Clinic in America seems to be mentioned a lot on here?

I hope you're doing ok today, I know it's easy to say but don't give up - we are all behind you and you deserve to have the help you need to live your life.

Good luck and thinking of you.
Eve.x

So sorry to hear this. HOW in the world can you possibly fake an eye or face droop? And my neuro-opthalmogist and his assistants always look at my double vision through prisms and assess it that way...so you can't just say you see double without them being able to confirm it! and I understand it's from weak muscles that don't track with each other; they can see that too by testing with having you follow a light.

Keep your serenity prayer in mind and keep that wonderful sense of humor--it will get you through this!

Hope you can find a better set of doctors.

Susan:hug:

Hi,

Thank you for your lovely posts. I needed a few days away from it all to re group.

I think their reasoning behind no more mg tests is that I've had at least 4 blood tests, 4 sfemgs etc etc between 2007-2009. So therefore in their eyes it just isn't mg.

I wrote to Angela Vincent in 2009 but she couldn't help me.

I've had 2nd opinions and more, unfortunately it seems here in the UK unless you have at least one positive test you can't possibly have mg.

I've told them the ptosis resolves with the ice pack test - they've seen it, it also resolves with mestinon and again they've seen it. However their answer to that is that I make it do it, because I believe it works. How can you argue against something that illogical?

I have no idea how I manage to put this on because believe me I would stop it in an instant! I am a youngish woman I find it incredibly disfiguring, why would I want the negative attention?

I am really stuck for ideas and I'm all out of fight at that moment.

I proved with prisms I have double vision when the nurse did the first lot of testing it lasted around 30-40 mins. I then had more tests with the dr .

Yesterday for the first time since June 10th (this year) I had no ptosis or double vision. Today its back with a bang!

I just wanted to let you all know I'm OK and to thank you for your supportive words

Rach x