hope you feel better.

Oh boy, Rach...I'm so sorry that you're going through this...What are your doctors doing? I know that you were planning on seeing someone in France...Are you still trying to pursue that? This is a terrible way to be suffering...When my heart rate goes up to 110, I freak out...Those palpitations are the worst...Why isn't anyone helping you with this? It's dispicable! There are plenty of MG patients who are seronegative, with no thymus abnormalities...They base the diagnosis on a positive response to mestinon, which you've obviously had....

All that I can say is don't give up! You are going to find out what's going on, and someone is bound to listen to you...If you were seeing my neuro., you'd have had a plasma exchange by now! I wish that you could get to Toronto somehow...I will pray that you get the help you need...Try to relax and take it easy...Don't lose faith...Someone will help soon!

Nicky

Rach, I know EXACTLY how you feel! I spent a MONTH in bed with the same sort of mess until I had to be taken to ICU!

At this point you need - absolutely have to have - someone with you ALL of the time - no joke!

Stay in BED all of the time - do you have a bed pan? Rest, rest, rest! I know how you feel about being bedbound, but it truly is a MUST until you are on meds!

WTH are those stupid docs thinking? This is absolutely insane! You need help now!

Hang in there sweetheart! Please stay in bed and don't lift a finger for anything! It's just not woth your health!

Know that I am sending a ton of love and prayer your way!

Love,
Erin

thank you so much for the messages.

Im having a better day today after pretty much doing nothing. Im still pretty weak but my breathing has settled down for the time being. Just bad bouts of double vision and ptosis. I keep feeling really weird, which is hard to explain, I feel like Im not really here and my eyes go all blurry and everything seems really bright.

My mum has emailed my neurologist to explain how things are but hes yet to get in contact with her.

The system here is so frustrating. Due to our geographic location there are a few hospitals, but basically my neurologist works in all of them. If I go to hospital I get put under neurology, so no one else gets to see me. It just so happened with the kidney infection I was seen by the surgical team as it was nothing to do with my "condition".

Due to this, theres no point in going to hospital. They don't do anything and I get left on a ward with nothing much happening other than more blood tests. Theres no actual treatment and Im surrounded by a team that don't know what to do. Despite the answer being completely obvious.

So I have been taking your advice seriously and cutting down doing everything that I possibly can. Its very hard.

I am waiting to hear from France. I just heard from London and the waiting list is several months long and they can't offer me an appointment right now.

So Im just stuck at the moment........great isn't it. The only thing that keeps me going at the moment is that someday they will figure this out and treat me and I will get better.

Thanks again

Love
Rach

I'm so sorry that it is taking so long for you to get a diagnosis and treatment. I know it is hard but like everyone else has said, do as little as possible and rest as much as you can until you can get the treatment you need to help you feel better.

You are in my prayers.

Hey Rach,

I'm just wondering...Have they ever done an MRI or CT scan of your brain?

I get the blurryness and the feeling like lights are too bright, along with some other weird symptoms that make me feel like I need a brain scan:S

Nicky

Ive had three MRI scans and a CT scan of my head, so I probably glow in the dark now!

The brightness thing is just weird. I can only compare it to when they do shots on the TV of people that have been wacked on the head and just before they pass out everything goes really bright and blurs around the edges. Luckily I don't pass out!

Theres no pain so its not a migraine and it can last a few minutes to just a few seconds. It ends up that I wear sunglasses.

The other one I get is when I have ptosis, I get the dreaded double vision ( tried to pluck my eyebrows a couple of days ago, didn't realise ow bad the double vision was until I stabbed myself with the tweezers LOL) and then my left eye decides it wont focus properly, it just zooms in and out. Very bizarre.

Im still taking it easy........but Im very very bored!

Love
Rach