Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


advertisement
Reply
 
Thread Tools Display Modes
Old 07-16-2013, 12:54 PM #21
Unsure81 Unsure81 is offline
Junior Member
 
Join Date: Apr 2013
Posts: 81
10 yr Member
Unsure81 Unsure81 is offline
Junior Member
 
Join Date: Apr 2013
Posts: 81
10 yr Member
Frown

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
Unsure81 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
rach73 (07-19-2013)

advertisement
Old 07-16-2013, 01:41 PM #22
rach73 rach73 is offline
Member
 
Join Date: Apr 2009
Location: Devon, United Kingdom
Posts: 531
15 yr Member
rach73 rach73 is offline
Member
 
Join Date: Apr 2009
Location: Devon, United Kingdom
Posts: 531
15 yr Member
Default

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
__________________
Diagnosed with:
Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa
And Myasthenia is still a possible diagnosis depending on which Dr I see.

My blog address is
.

.


Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can,
And the wisdom to hideThe bodies of Doctors I shot
When they said,"You're perfectly healthy,
It's All In Your Head."
rach73 is offline   Reply With QuoteReply With Quote
Old 07-16-2013, 09:15 PM #23
southblues's Avatar
southblues southblues is offline
Member
 
Join Date: Jul 2012
Location: Georgia USA
Posts: 818
10 yr Member
southblues southblues is offline
Member
southblues's Avatar
 
Join Date: Jul 2012
Location: Georgia USA
Posts: 818
10 yr Member
Default

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.
__________________
Celeste
southblues is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
rach73 (07-17-2013)
Old 07-17-2013, 12:48 PM #24
Unsure81 Unsure81 is offline
Junior Member
 
Join Date: Apr 2013
Posts: 81
10 yr Member
Unsure81 Unsure81 is offline
Junior Member
 
Join Date: Apr 2013
Posts: 81
10 yr Member
Default

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
Unsure81 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
rach73 (07-19-2013)
Old 07-17-2013, 01:59 PM #25
Online User Online User is offline
Junior Member
 
Join Date: Jun 2013
Location: Michigan
Posts: 16
10 yr Member
Online User Online User is offline
Junior Member
 
Join Date: Jun 2013
Location: Michigan
Posts: 16
10 yr Member
Default

Quote:
Originally Posted by rach73 View Post
Appointment today was a disaster.

Basically accused of putting on my ptosis and facial droop and all my eye problems. So upset.
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
Online User is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
rach73 (07-19-2013), southblues (07-17-2013)
Old 07-19-2013, 07:44 AM #26
rach73 rach73 is offline
Member
 
Join Date: Apr 2009
Location: Devon, United Kingdom
Posts: 531
15 yr Member
rach73 rach73 is offline
Member
 
Join Date: Apr 2009
Location: Devon, United Kingdom
Posts: 531
15 yr Member
Default

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
__________________
Diagnosed with:
Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa
And Myasthenia is still a possible diagnosis depending on which Dr I see.

My blog address is
.

.


Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can,
And the wisdom to hideThe bodies of Doctors I shot
When they said,"You're perfectly healthy,
It's All In Your Head."
rach73 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Online User (07-19-2013)
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
I like you guys Brain patch Bipolar Disorder 9 03-06-2013 02:00 PM
Hello Guys! cricket001 Myasthenia Gravis 5 06-22-2009 10:06 PM
Hey Guys ...... Mollyb09 Social Chat 6 05-04-2009 07:25 PM
for the guys........... Chemar Social Chat 1 02-14-2009 07:02 PM


All times are GMT -5. The time now is 05:46 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.