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

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:(

:hug: Rach :hug:

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 :hug:,
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.

:hug:
Annie

Rachel,

Sorry that you're not feeling well.:hug:

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:hug:
Nicky

Thanks
 

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:grouphug:

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

thanks
 

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

An update
 

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

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

hi
 

Hi and thanks again for your replies!

Lizzie - you have to laugh when things like that happen. I'm glad I made you laugh! Yesterday my face went and that cracks my husband up because I end up talking like prince charles! We also have a term for when I fall over due to balance or my legs giving out which is "break dancing"! I choke quite a lot too, because of its frequency we no longer react. We had a friend around doing some decorating for us and I started choking mid sentence. When the choking ended hubs just turned to me and said "have you finished now?" and we collapsed in laughter. My friend couldn't work out why we were so calm. After he had been here a few days my choking didn't freak him out so much!

Redtail - the previous 4 sfemg/emg have all been negative. I've only ever recorded one jitter which isn't enough for a positive result. So here we go again! Although some Dr's now accept you can be negative on anti-bodies, they still find it hard to accept you can have a negative sfemg/emg. Despite Angela Vincents findings that a positive SFEMG/EMG is found in less than 70% (at Oxford) in patients with no detectable antibodies.

Thanks again,

Love
Rach
No ptosis as yet this morning......will it last? who knows?

I hope it lasts!

Thinking of you.:hug:

Desert Flower
 

Thanks,

it didn't last and the facial weakness is back! Oh well x

Love
Rach

LOL...Thanks, Lizzie...I got a good laugh out of that! lol

I don't have too many choking episodes so much anymore. But chewing is sometimes still an issue. I find the worst things are the muffins from Muffin Break, they are very stodgy, and I struggle to chew them, they clag up my mouth and make it hard to chew. My sister sits and smiles while I try to empty my mouth of muffin with a mouthful of tea.........just as well they are yummy and I try to eat them in very small pieces.

Redtail,
I do the same thing with Cracker Barrel's Cornbread! I love it...but I do it everytime!

Thanks Everyone
 

Thank you all for your replies, I loved that story about the dinner with the MG patients and their Drs it can be a bit like that here sometimes!

So sorry I haven't been on before to say thanks for your contributions. Ive been quite poorly and in bed for a few days. I think I have worked out what is going on and I have a kidney infection. My kidney infections don't present in the usual way so often catch me off guard! At least I haven't had one for 6 months! Just waiting to hear from my GP today. Just need to get rid of it before my trip to hospital next week.

Thanks again

Love
Rach

Hey Rach,

Sorry you've been having a few really rough days, but glad you figured out it's a kidney infection and hopefully can start antibiotics soon. I know you don't want to get your hopes up too high for your hospital stay next week, and I don't blame you. I'll be keeping good thoughts that you will finally get some answers and the help you need. Hang in there and feel better.;)

Hugs,
Pat