[ConnieS]

Hi Everyone!!! I've so missed all of you!!

Sorry I haven't logged in much, took me a while to get things sorted out for Dad and family, then now I've been back at work since Jan. went back against my family's wishes, namely because mum wanted me to rest more, since she always felt that my symptoms were due to "overwork". Lol.

And.... I just found out I'm currently the top in my branch! it's so amazing, I didn't even realize it. I overdid it sometimes, would end up having to take days off and more visits to the doctors, but I still did it. I want to carry on working for as long as I can, hopefully till I really turn 80. Lol...

My condition has been manageable, still hate the spasticity, but am learning to manage it still. Certain days I just don't feel like taking the cane due to stiff and sore shoulders but I still have to. Some days I just refuse to and end up dragging my feet everywhere. I'm lucky in that I still think I am fairly mobile, and no one part of my body has given up on me yet. Recently voice has been changing and am trying to ignore that. Been feeling breathless for past 2 months, it's building up and my GP thinks it maybe my childhood asthma. He put me on predisone which didn't really make me feel better. It's like this weight on my chest that is always there. I'm still hoping for a differential diagnosis, may go and see another neuro soon. Gave up on my old neuro as he kept changing my diagnosis. Lol. From ALS to pls to ALS to stiffmans syndrome. Not to mention occassional anxiety disorder again. He's driving me crazy.

Been trying to delay seeing a neuro after that as just didn't want them wasting my money and time, not to mention energy. Lol. Maybe one day I'll be brave enough to see one again.

How's everyone? Pat? Becky? Annie? Erin? Nicky? Kate? Sue? Kelly? Maurice? So many of you whom I've been thinking about. I promise I'll update more.

[Pat 110]

Hey Connie,

It's so good hearing from you! Congratulations on being #1 in your branch...good for you! So happy for you that you were able to return to work.

Sounds like you still don't have a confirmed diagnosis or at least it keeps changing. You must be very frustrated. I do hope you'll find a good neuro soon, but I certainly understand how frustrating that can be. Are you taking any meds that are helping? Sure hope your breathing gets better. Glad to hear the cane is helping, when you use it. lol

So, don't be a stranger...we miss you around here! Take care of yourself and hope to be hearing from you again soon.

Big Hugs,
Pat

[redtail]

Hi Connie,

its soooo good to hear from you, congratulations on being the top person in your branch.
Glad you've been able to manage your condition, but sorry you are having neuro trouble, how frustrating!!!!!

I'm struggling at the moment, my dear Dad isn't well, so my body is struggling with the stress, but my family is wonderful so keeping an eye on me as well.
It is cooling down, wich is wonderful, I love this time of the year, so does my body.
good to see you around again
Kate

[suev]

Hi Connie!

We've missed you! Congrats on being #1 in your branch....you are determined..and it paid off!!

Sue

[ConnieS]

Hi!! thanks for everyones concern, I've been great, except for my health issues. Went out today to see my optician, and found out that I have a few papilomas On my inner eyelid. ;( that means I have to go get them tested! Yucky. Probably left over from my viral attack 2 mths back. Well, hope it gets well soon!!

Pat: thanks hon. You're always sooo sweet! Haha.. I'm now relying on alternative medicines and do my best not to take the meds.. The main problem I stil have now is spasticity in limbs, with all the positive hyper responses when the neuro knocks here n there. The breathing's getting better I feel, but talking's still "airy". Lol.

Kate: glad to hear your dad's doing well!! It's great to have your loved ones around you. I miss dad terribly at times, keep reminding myself that he's having a feAst in heaven so I gotta be happy. What matters most is the family stays strong together! Hang on sweetie, i'm sure things will get better!

Sue: thanks dearie! I didn't think so much, just went on and on, cos I didn't know when my legs were gonna stop. Guess that helped me!! Wanna let everyone know that if I can do it with my condition, then nothing should be stopping them if they're well and healthy!!

Miss all of you!

[AnnieB3]

Connie, How the heck did I miss this post? I haven't been feeling too well lately and have not been on too consistently. Why is it never nothing?

Congrats on your successes. I'm glad you are able to still do things, especially that which makes you happy.

You are amazing for how you can live with not really knowing what your body is doing to you. I cannot imagine living with that kind of apprehension. I hope it isn't ALS and is some other odd combo of things. Have you seen a pulmonologist lately? Like for breathing tests?

How is the weather there? It's been so odd this year - we have a growing season like the Amazon! Dandelions the height of bushes (well, not THAT high but close).

Everyone here has such great attitudes about being sick. It is super hard but what are you gonna do? I really hope your health at least stays the same (you know what I mean!) and does NOT get worse. It would be great if you would get all better. I wonder how many people get sick due to viruses or bacteria screwing up their immune system.

You take care of yourself. I hope you will continue to hang around here. Keep fighting the good fight.


Annie

[erinhermes]

Hey there! I was so happy to see you posted!

So you have been kicking butt @ work,huh? I'm so proud of you!

THigs have been crazy here as well. The Mayo was grea, but they didn't really give me any new info. I've had so many new breaks since the cyclosporine that I had to have emergency surgery 3 weeks ago -I turned my head to the left and my back "popped" and I was unable to move - plus it hurt like hell! I already knew it was broken and was scheduled for surgery this coming week but it worked out......Now the other side is broken........I could scream!

I finally went to see that "super neuro" here in SA and he was AWFUL!
He actually had the gall to tell me that I will NEVER get better and will end up wheel chair bound or die early - I told him he must still be ****** about losing his job @ Hallmark - what a jerk!

He then did the strength test and THAT is when my back initially broke.

I am up to 200 lbs. now. It is so hard hurting all of the time and looking like this. I wear maternity pants b/c my stomach is so swollen........

Loooooooooooooooongstory short; that is why I haven't been on, but I have been thinking about all of you and missing you terribly!

Love,
Erin

Originally Posted by ConnieS

Hi Everyone!!! I've so missed all of you!!

Sorry I haven't logged in much, took me a while to get things sorted out for Dad and family, then now I've been back at work since Jan. went back against my family's wishes, namely because mum wanted me to rest more, since she always felt that my symptoms were due to "overwork". Lol.

And.... I just found out I'm currently the top in my branch! it's so amazing, I didn't even realize it. I overdid it sometimes, would end up having to take days off and more visits to the doctors, but I still did it. I want to carry on working for as long as I can, hopefully till I really turn 80. Lol...

My condition has been manageable, still hate the spasticity, but am learning to manage it still. Certain days I just don't feel like taking the cane due to stiff and sore shoulders but I still have to. Some days I just refuse to and end up dragging my feet everywhere. I'm lucky in that I still think I am fairly mobile, and no one part of my body has given up on me yet. Recently voice has been changing and am trying to ignore that. Been feeling breathless for past 2 months, it's building up and my GP thinks it maybe my childhood asthma. He put me on predisone which didn't really make me feel better. It's like this weight on my chest that is always there. I'm still hoping for a differential diagnosis, may go and see another neuro soon. Gave up on my old neuro as he kept changing my diagnosis. Lol. From ALS to pls to ALS to stiffmans syndrome. Not to mention occassional anxiety disorder again. He's driving me crazy.

Been trying to delay seeing a neuro after that as just didn't want them wasting my money and time, not to mention energy. Lol. Maybe one day I'll be brave enough to see one again.

How's everyone? Pat? Becky? Annie? Erin? Nicky? Kate? Sue? Kelly? Maurice? So many of you whom I've been thinking about. I promise I'll update more.

[AnnieB3]

Erin, I'm sorry things have been so rough for you. When you feel better, can you do a new post and let us know how you are doing? Doctors are not psychics and no one can predict the course of a disease. That was unethical for him to say that to you. Pred is obviously very bad for you and is causing more side effects than MG. Hang in there.

Annie

[ConnieS]

Annie!! Am so glad to hear from you. you're still as wonderful as ever, it's amazing how superb u are. Sorry to hear that you havent been well, is it the weather? My condition has deteriorated, but slowly. My spasticity H&S gotten worse, I know as they jam up quite often. Very often I'll b carrying something bu hugging it with o e hand, just Like how people carry files, and then I can't put it down. When I sit for long, say 15 mins, my legs would be stiff after that too and it'll hurt when I move it. I would love to find out what is it but am just so fearful of meeting another idiotic dr. I think my lifes happier without them. Lol. I've not seen a pulmonologist yet, hard to get to one here. I'm using my will to stay happy and keep moving.

Erin! Babe, I've missed u! So sorry to hear that u're not doing well, hope all becomes fine soon! I hope that super neuro gets kicked out soon. I think he's just horrible to say that to u. He seems to b destroying his own reputation. Do let us know how u're doing when u can. hugs...

[ConnieS]

Peep, how's everyone?

Lol. I'm going to b more regular here now, finally stopped work yesterday, and will b resigning officially end of the month.

It's been an amazing 6 mths back at work. I gave it my best shot and was top in my branch those 6 months. Finally had to stop now, as my speech n weakness got kinda bad. I know I'm gonna miss my clients, told them I'll b back when I recover.

I've been in China these past 3 mths, searching if there's anything that traditional Chinese medicine could do for me. Found a few good doctors, met some quacks. Lol. My diagnosis is more or less confirmed now, it's either PLS or UMN dominant ALS. To me there isn't really much difference since both has no cure, tho out of the two I'd rather choose PLS. Haha.

I met so many people like me, that I felt somewhat comforted. I felt pretty normal there. Haha. Saw a few of the top neuros there and all confirmed it's some sort of MND. One of the two. Finally mustered up enough courage to c a neuro in Singapore again, and amazingly I found a really good one. He's old, prob in his 70s, but many neuros used to b his students. He conducted my neuro exam with such finesse that I was drawn in. Lol. During the exam my foot went into a spasm and he witnessed it. It was "vibrating" the whole 20 mins during which he tested my reflexes n everything. He saw my probs and said it's not something easy. Asked me to go back to my old neuro, whom he knew personally n said he'll talk to him to make sure he looks at my peobs w a whole new mindset. This new neuro was really concerned about me, as he could c I wasn't faking it. Kept reassuring me I was doing well even tho I know I failed half the tests. Lol.

Spasticity has become so bad that my left foot has foot drop now, and atrophy, coupled with my left foot turning inward. I can't even place it flat on the floor now. It also goes into spasms when it feels like it. Lol... My left hand has the same problem. My speech is also mildly affected, it's hoarse when I try to project my voice n my tongue is loving my right cheek so much I can't move it toward my left cheek. Only realized this at the last neuro visit w the new neuro. Kind of freaaked me out.

Currently am on 55 mg baclofen and 50mg myonal. Am supposed to keep increasing the dosage but it's making me real drowsy.

I had a session to announce to my clients yesterday that I'll b leaving and today I hav a very sore throat and legs are aching really badly.

Now I'm gonna hav so much free time I'll b on here ev day unless my body fails me. Lol... Missed all of u badly. Tho I wasn't here, u guys were always in my thoughts!!!