Rach, I am sorry to hear that you are going through such a rough time. I am glad that you are going into the hospital for some more formal testing. How is your support system? I know that even when I am not feeling the greatest, going out for a car ride with a friend or family member helps. It gets me out of the house and sometimes a few good laughs are all I need. Take care, Melanie

Hi Rach,

I'm sorry to hear you are having such a rough time right now. I know that when my weakness sets in, it's like instant darkness and depression. I feel like it's more chemical, than emotional...but maybe it's emotional. It's hard to have our bodies totally defy us and feel like they are going dead. I have been feeling so much better lately with all of the treatment that I am recieving...so please please try to keep it in the back of your mind, things will get better. You can manage this illness, you can live some kind of normal, even if it's different than what you wanted at one time....
As for the stomach pain....I have had gallstone (and had my gallbladder removed) and ulcers...they both feel similar in type of pain...mine felt like the most intense hungar squeezing pain ever. But the gallstones were so much worse than the ulcer. Have you noticed any type of pattern to the pain? My gallbladder used to act up if I ate anything fatty...I remember my babe made me breakfast in bed, with eggs and bacon one morning, and I ended up in the hospital doesed on pain killers for 3 hours because the pain was so intense for so long. So anyway...I hope you can get things figured out soon. I will be praying for you !!! Take care and be strong.
Jessica

Thank you
 

Thanks everyone for your messages of support. I really appreciate you taking the time to reply when you have your own stuff to deal with.

Jessica - there doesn't seem to be a pattern with this stomach pain. Both Hubs and I are dieting at the moment so everything is pretty low fat. The day before the pain in my stomach I completely lost my appetite - very unusual for me! I didn't eat until 9pm that night and had a low fat version of Macaroni cheese. Which could have kicked it off, but I've had cheese since and had no problems. So I'm left scratching my head as to what caused the pain. When it was happening though I would have happily taken morphine even though it makes me a bit aggressive! I've had a few twinges since but nothing on the scale of Thursday!

Mel- I hope you had a good birthday and were spoilt rotten! Thank you so much for your offer of support. I do the same things you do to try and get me out of a dark mood. It does work but sometimes you just have to give in to it.

I found a site today for neuro opthalmologists which was interesting - but I can't remember what it was called. It looked at ways to test for bilateral ptosis. Cover the eye with ptosis (get in front of a mirror first!), then close your "good" eye for 20 sec. Look in the mirror with the ptosis eye still covered. My "good" eye lid actually drooped and had ptosis also! Its only the muscles in my forhead that are pulling my eyebrow up that are keeping this eye open. So I have learnt a new party trick today!

Very tired today, been on oxygen most of the day. Ive been taking 75mg of mestinon every 4 hours but my ptosis and DV are yet to go away.

Thanks again:grouphug:
Rach

Hey Rach,

So sorry you're still going through so much. I don't even know what to say anymore...my heart goes out to you. You're a very strong women, so just hang in there...good things are going to happen for you. Good luck with your hospital stay...this could be the one.:) Take care and keep us updated. Thanks for the new party trick!;)

Hugs,
Pat

Hi Rachel,

By any chance, did you ask your neuro. about the Ryanodine antibodies- if you may have them, I mean? I keep remembering this thing I came across....It says that people with this antibody (without having Musk or achr) do not show jitter on a single fibre...

http://jnnp.bmj.com/content/76/5/714.abstract

Nicky

Hi Rach,

sorry you are still having a bad time at the moment, just to let you know I'm thinking of you.
I wish I could transport some of the coolness of the UK to here, its been warm, and tomorrow will be 37c(98F), I'm at my brothers place in Perth, I'm just thankful they have a pool>
I hope today is a better day for you
Kate

Ptosis/and lots of other stuff....sorry
 

Hi Rach,
Just wanted you to know you are in my thoughts and hopefully you'll get some answers soon. You have dealt with so much!!! I think it is perfectly normal to feel some sort of depression with any disease. It is like grieving for a loss. I know I have days where I just sit down and cry until I'm done. I try not to stay in that frame of mind for too long but it does help to get it out. This disease is such a roller coaster and it can drive you insane!!! I know things are going to get better for you soon!!!:hug:
Kendra

Hi
 

Thanks again for your replies. I seem to be a bit better mood wise at the moment although my MG flare continues. Yesterday was the first day in over a week that my eye stayed open with mestinon. However today My eye refuses to open and my face has also been messed up with it. Swings and roundabouts I think.

Spoke to the MG nurse at Oxford today who is lovely as we have a concern that although I have been booked in they may not have a bed for me. She gave me the name and number of who to call so that's good. She also ran through with me what they will be doing whilst I'm there. Unfortunately it looks like EMG / SFEMG number 5 is going to take place. At least the guy that does it there makes it pretty painless. I will however end up looking like a pin cushion. They seem much more organised there and the MG nurse treats me very well and seems to believe me so thats good.

Nicky - I don't think I've been tested for those antibodies so I will make sure I ask.

Redtail- I would welcome some warmish weather! Its been sleeting all day, but no snow! Thank you for your kind words.

Pat - thank you for your message of support. I really hope we get some where this time with next months hospital admission. I try and remain hopeful but its difficult, Ive been through the "we will admit you for tests and find out what it is" before and was treated terribly.

Kendra- Thank you for your message of support. I really appreciate you all taking the time out for me.

Sorry in advance for any spelling mistakes etc. Ptosis not good and double vision. Makes typing such an adventure!

Love
Rach:grouphug:

Please forgive me, but I had to laugh out loud when I read " Makes typing an adventure" No truer words could express what it's like when your vision is off, and you're trying to type.. It cracked me up.
That's exactly what I do, I laugh at some of my now body adventures.
Love Lizzie
:hug:

Hi Rach,

so sorry you are going to have to be a pin cushion again, I feel for you, I didn't have to have a SFEMG, I was diagnosed purley with a blood test and my neuro looking at me.
I really hope you don't have to go through it all again, what was wrong with the first 4???
take care
Kate