Hi,

I'm on a real downer at the moment, I have gone down hill and have had ptosis since Friday that mestinon won't get rid of. On top of that the weakness throughout my body has continued.

I've tried upping the mestinon to 90mg which opens my eye, but makes me feel ill, with the shakes etc. So it seems too much, although it does improve my weakness also.

Ive noticed this morning that the eyelid with the ptosis is a different colour to the other one. It almost looks bruised, from the edge (where its above the tear duct) to the middle of my eyelid. I can't say for sure if this has happened before, Ive never noticed. Has anyone else had this?

I'm still undiagnosed, my bloods all came back negative. However the Dr has asked me to return to Oxford for tests. He wants to re -do the tensilon and the ice pack test as he wants them done more formally than when I was in the local hospital.

I have to be honest and say I feel at my wits end. I really don't know how I can continue to keep going on like this. I'm not contemplating doing anything stupid, to relieve my own suffering would cause unimaginable pain to my friends and family. But what do I actually have to look forward to in life? When its like this?

I'm sorry Im having a tough time at the moment and I'm just throwing a pity party. Your all welcome to come and join in.

Love
Rach

Rach

We all go through this "depression" at one time or another {I know I have more than once} It is NORMAL to feel this way.

My MG is sort of all over my body and although I have bad double vision I don't have the drooping eyes. I do have to say when my eyes are at their worst I look bruised {my son pointed it out to me}

I hope you get DXed soon.

Rach ,
I'm so sorry that you are having such a rough time right now. I know the feeling of "If my life will be like this then I don't want to be here". The past 8 months have been very trying for me. I was at the end of my rope. Depression was so bad that I felt like I was in a deep dark tunnel and couldn't see my way out of it. I cried ALL the time and kept telling God, that if he wants me to come home then I am more than ready. Well it's 8 months later and I am still here I also am so much better now than I was before and actually look forward to each day again. Of course my situation is different from yours because I have treatment for my MG and you are stuck in "limbo land".

I am reading a very good book called How to Handle Adversity by Charles Stanley. I am not sure what your belief is but I am a Christian and would recommend this book to anyone who is going through any type of adversity. It makes you look at your adversity in a different way. Funny thing is that I picked it up at a dollar store for only $2.00 and it is one of the best books I have read in a long time. Since you are having trouble with your eyes then you probably can't get a copy of it but you can always keep that in the back of your mind for another time.

My point is, I know it is hard but try to hang in there. Take it one minute at a time and don't give up. I am praying that your diagnosis and treatment plan will come very soon and brighter days are ahead for you.

Take care and don't apologize about being down at this time. We all have been down because of MG and we are here for you. So please don't hesitate to post on here how you feel. You need encouragement and this is the place where you will find it.

Blessings,
Shari

Rachel, It sounds to me like it is either circulatory or nerve related. I was thinking circulatory due to the discoloration. Do you have an ophthalmologist, not optometrist, you can see? Neuro-ophthalmologist would be best. They can look at the circulation in and around the eye. They can check for any nerve problems.

It doesn't sound like an MG problem. How are you otherwise? Are you weaker?

Try not to overdose on Mestinon!!! More isn't always better and some studies have shown that the neuromuscular junction can only handle so much acetylcholine at once (or higher doses of Mestinon, like 120 mg. and up). Some studies have shown 100 mg. is the limit.

I'm sorry you are having such a tough time right now. I wish you had a better health system over there. I can't stand all that you have gone through. Please go in if you can.


Annie

Rachel,

Sorry that you're not feeling well.

I'm glad that your new neurologist has not given up on you (as he shouldn't) and is continuing on in other diagnostic avenues...Don't be down, although I can understand how it's easy to be down with the situation...I know that you're going to get help soon, I can feel it...It's not your fault that you're sick and someone is going to help you soon because you haven't given up on yourself...

When you described the darkening of your eyelid, it reminded me of the pic. on wikipedia of the ptosis...Check it out..

http://en.wikipedia.org/wiki/File:Myasthenia.jpg

When my tongue is really weak, and I can't barely move it, I've noticed that it's not the same colour as when I can move it...It's very strange, and I've always wondered about it...When my tongue is weak, it's really pale, colourless...When it's normal again, it's red- like it's supposed to be...It's almost as if the blood isn't flowing as well to it when it's weak...

I've always likened my persistent tongue weakness to the persistent ptosis that others describe...The intensity of the weakness is the same, just a different location...Maybe when the receptors are really 'down' this affects blood flow too in some way...

Anyway, don't give up! We've all got your back here- this neurologist will treat you as should be!

Take care, Rach
Nicky

Thank you for your replies. I have woken up today feeling brighter. Yesterday I did have a few tearful moments, I always try and limit myself to one day and try and distract myself after.

I find this depression - although I think that term is a bit strong, as people automatically think you should be on medication! LOL Seems to be part of chronic illness that no one wants to discuss with you. So I am grateful that you have said that at one time or another you have been hit with this.

Thanks for letting me know as well that some of you have also found you have discolouration with Ptosis or a weakened tongue. That picture was great Nicky. My eyelid definately goes a different colour - its open at the moment, but I can already feel the heaviness in my brow, so it wont be for much longer. It was interesting Joan that you said your son noticed yours.

Shari thanks for the book recommendation, I'm not religious in any way, but I'm sure it may provide me with some new ideas.

Annie thanks for your post. It made me remember that I'm supposed to be seeing a neuro opthamologist when I go up in March. When I saw them last time they were the only Dr's to ever notice that my pupil drifts in the eye that has ptosis. It drifts out towards my ear. So I know they are observant.

Thank you all for your support I really appreciate it. Although I wouldn't wish this on anyone it was a comfort to know that lots of people go through this.

Love
Rach

I'm so sorry, you've been having it rough.
Depression is a difficult thing to go through, it can be brutal. It's very common amoung those of us with chronic illnesses.
I live my days in the moment.
I don't know what tomorrow will bring for me, so I try to find something to
enjoy, whether that be a good movie, a book, or sometimes, I'll read something funny. I find something, anything to enjoy. And there are times, when I allow myself to grieve how I once was, I think that's very important to do.
You do have a purpose, it may not seem like you do, but you do, and you are needed in this world. Just that , right now, it's clouded with the illness.Just coming here, and encouraging, or chatting with someone who is new, or uplifting one of us while we're down, is a place you are needed.

Let me know what your doctor says about your eye. I'm curious. I've had my lower lid sag, and from the sagging, it would redden a little, but with Myasthenia, so many things can be right there with it, popping up when it acts up. You just never know, but it's so important to talk with you doctors about it.
If you ever need to just chat, please please send me a message, I'd be more than happy too.
Much Love
Lizzie

Rach,

Glad today was a bit better. You are not alone with the 'depression' - not the kind that needs meds....just the kind that gets you really low for a day or so. I think many of us have been there. For me, it always seems to hit hardest when I am overtired. Then I look back and get 'mad' at myself for not getting anything done.

We are our own worst enemies and best friends .... all at the same time!!

I hope your new docs are finally able to give your symptoms a dx and that you get the meds you need.

Sue

Hi Lizzie and Sue,

Thank you both for your replies. I'm ok again today, not as bright as yesterday but still no where near what I was on Tuesday.

Just got my hospital admission papers for the hospital today. They want me in at 1130am on the 8th March. I have to ring at 830am to confirm I have a bed. The issue is that we will have to leave at 7am to get there for 1130! So I have contacted the hospital to see what they suggest! All good fun.

In a lot of pain today with my back. Its right between my shoulder blades. I don't know if its my back or stomach so I have taken my lansoprazole for my stomach just incase its that.

Hopefully it will settle down.

Love
Rach

I spent much of yesterday in bed the pain in my back and stomach got so bad I called the Dr out.

I've had bloods taken again and they are investigating me for gall stones ......again!

The pain has settled today. I'm still a bit tender but nothing like it was yesterday. So we play the waiting game again.

I'm now wondering if my back was sore due to not being able to hold my head up and the stomach pain coincided with that. Who knows? It just adds another level to the mystery! LOL

Thanks

Rach