Hi Becky!
 

Trust me Erin,
I'm being very careful this time! I have NO desire to go back to what was going on. One of the guys at work asked me the other day if I'm taking "happy pills" or what, cuz I'm always smiling! I told him when you come through what I have and get such a wonderful resolution, it puts all of life into perspective. Life is a reason to smile!

I know you know that feeling too!

Becky

Hey Becky!
 

Heading bush
 

Just thought I'd use our check in thread to say I'm heading bush for a while:yahoo:

I'm assuming this is a very Australian saying.:rolleyes: I'm going with one of my younger cousins to the wheatbelt, which is east of where I live. We are going ancestor hunting, which will mean roaming through cemetries and visiting old homesteads, hopefully dropping in to see some long lost relatives we've never met.......hope everyone is doing ok, and I will see you all in a week or so:Wave-Hello:kate

Have a great time and don't overdo it!! Hope it is cool there! It's over 100 in Texas today!! Thank God for AC! Have fun!!!!!

Yep its cool alright, about 14c/57f, and raining glorious rain, which we reallllllllly neeeed.

Phew, I feel for you, our summer just gone was quite warm, we usually reach temps of about 37c/100f. One summer a few years ago, we had a week over 38C, I was fit and healthy then and was working outside, now I flake on the lounge.

Hi everyone!
 

Hi everyone, so sorry for missing out on so much! Couldn't reply after the last post as went into sort of a crisis and was put on oxygen for close to two weeks. It was soooo scary, the first time I found myself being unable to breathe and gasping for air, even though I had breathing tubes attached. The sound I made then while gasping for air still freaks me out. :eek:

After more than a month in the hospital, am back in Singapore now, and readjusting to everything here again. The doctors there put me on a trial of mestinon, after I tested positive for a few segments in the Tensilon test, but the mestinon didn't help much so they took me off that after a few days. Now they're suspecting MND or ALS, which sounds so much scarier than MG. Did 3 emgs there, my first showed some damage in a few areas, my second (done 2-3 wks after the first) showed more damages and in more areas, and the neuro was exceptionally concerned as based on that EMG, he could diagnose me with MND. He then asked me to do a third one, which was more optimistic then the second emg, though worse off than the first.

Now they're monitoring me for 6 mths, after which I'll do the emg again to see if the results are the same or if the symptoms have progressed. Am not really thinking much about what MND or ALS entails, just doing my best to get better. Haven't really heard about MND or ALS until the docs there told me about it. Geez. That pretty much sums up the past month. Am just so happy to be out of the hospital and off the breathing tubes/oxygen mask. :p

Have missed all of you, how's everyone doing??? :D

connie it sounds so scary to be in a foriegn country and sick. are you from the far east or just temporiarly there? do you think the medical system is better there or worse? is it govt run or hmo type insur? i'm not planning to go anywhere but is interesting to learn new things! some things i've seen on tv suggest you need cash to get treated in some countries in far east-truth or fiction?:confused: thanks! hope you're feeling better!

Welcome back Connie and hope things go better for you! You deserve better. You have had a battle.
Hugs,
Simon

Hi Connie,

It's so nice hearing from you. I am not at all familiar with the other diseases you mentioned, but are they treating you for one or both of them now? After spending a month in the hospital I'm sure it feels so good to be home again. I hope you get some answers soon. Get lots of rest and keep us posted when you feel up to it. Take care.;)

Hugs,
Pat

Hi xmas!
 

Haha.. Yes, it was sort of scary. WAs thinking how they were gonna ship me back if I was in that state.. I was in China for my treatment, as MG was considered something that was definitely curable there. However turned out that mine wasn't MG so things got a bit messy. I did get the doctors email addresses, if any of you would like to go there and give it a shot, let me know!

The medical system in China is quite different from Singapore, where I am currently. In China, I guess you could say as long as you had money, you could be treated, and would be able to get top consultants from other hospitals coming to see you. The key word's money. They do have a public healthcare system, but there's a limit as to how much you can use, and once that limit is reached, most hospitals chase their patients away. However, if you're the one paying, then some hospitals allow you to stay until you are better. Someone I met there changed as much as 7 hospitals as he had reached his allowed limit in each hospital. This is largely due to their huge population, which amazingly also has its benefits. Lots of diseases which are deemed as rare in other countries are seen as normal diseases, as the incidence rate is much higher. Lol. That also explains why they're able to treat MG and also many other rare diseases using a combination of Traditional therapies and Western Medicine. There's a lot of hospitals there, rarely do I see GPs or clinics, as they have consultant visits at the hospital readily available. One visit costs about 0.58 USD for doctor's fees, and well known consultants or the more experienced ones charge between 1.50 USD. Usually you're able to see 2-3 hospitals on one street in the cities. My hospital was facing two other hospitals. Lol. There are several reputable hospitals, well known for different kinds of illnesses. The one I went to was good at treating autoimmune and nervous system diseases, hence their reputation in treating such diseases. A point to note though, healthcare there is quite affordable to locals who live in the cities, but are deemed as luxurious for those who live in the rural areas. Its probably true to say that many people (especially from the rural areas) go untreated or delay treatment as they cannot afford the treatment fees.

In Singapore, we have to see a GP to get a referral to a consultant at a hospital. If it was under the public healthcare system, it would take quite a while, sometimes a 3-6mths wait. And often we'd have to queue for quite a while. Healthcare is expensive here, though there are various schemes available to help people offset treatment costs. However, no one gets turned away at public hospitals simply because they do not have cash on hand, especially for residents. Usually hospital bills and treatment costs are partly borne by the Government for locals and patients from lower income groups can apply for assistance to pay their bills.

Hope this provides some useful info for all of you!

Hi Pat!
 

Hi Pat! Yes, its really great to be back home. The diseases which I've mentioned can't be treated, they're both fatal and progressive. There's only one drug to try and slow down the progression, and lots of vitamins to supplement the diet. How are you feeling now? :hug:

Thanks Becky
 

Thanks Becky!!!! I've missed you!!! How have you been???? Am so proud of you! Doing everything you can.. Hehe..

I'm BAAAAACK!
 

Hi Everybody! Gee whiz, lots and lots of stuff going on, huh?

First, I've missed you all alot :Heart:- just been really busy with work, Steve's books, company.....blah blah blah. Seems like when I have the time, I don't have the energy to do too much computing! And I've had to "share" my computer with hubby and in-laws!

I am holding about the same - maybe a little more tired and definitely having more muscle PAIN than weakness. Seems I can either be weak or have my muscles spasming - I'll take the spasms cuz I can move about then!

My visit at MDA was interesting - no mention of MS! :D , but they've brought up yet another new thing as a possibility. It's called periodic paralysis. However, my blood test results with the high numbers for the HSV-1 was suspect enough that I am going in for a LP next month, as well as SFEMG. Trying to confirm the Virus and the MG. I really liked the 2 doctors that saw me - they both understood how things fluctuate, took note of the eye droop I had years and years ago (others discounted it completely). The main doc says she's not convinced either for or against MG - that's when she brought up the paralysis thing.

Most encouraging was that when I told her I was really tired of 14 years of problems with no answer, she responded that it may take them a while but they would get the answer! WOOHOO! And if they give a dx, it should stick!!!! So I'm just keeping on keeping on and trying to pace myself - sometimes I do better than others, but work is real understanding as well as my honey and in-laws so that helps so much!

I'm much more concerned for some of you! I haven't read all the posts yet, but wanted to post here before my "confuser" dies on me again (it's been doing that a lot!).

Erin - what on earth happened???? I haven't read all the posts, but was scared to death!! I finally saw that you're back home and doing better, so I calmed down, but I was almost in tears here. I'll send you a PM, ok? If it's the heat I think you need to come to Denver for a while - we keep getting nice cool days, and lots of rain so it's SO green here. Just beautiful!

Connie - you will be very much in my thoughts! You are so amazing to be able to post so calmly - I know you must not be feeling that way inside with those two possible dx's hanging over your head. Know that even if I can't get on often, I will be sending hopeful thoughts your way. They get these things wrong all the time, so keep the faith and keep us posted as often as you can, ok?:hug:

Kate, how fun! I love digging in to old ancestry and history! I hope your trip is fantastic, and you fare well. I just got an email from my daughter about how hot it has been in Australia and would love to send it to you! It's the cutest darn thing about Koalas begging bikers and homeowners for water - the pictures are just adorable and make me wish I could go there!
If this doesn't sound familiar, PM me with your email and I'll forward it to you!

Mary, I saw a post that looks like you are doing a little better - I'll have to read more to get real up to date on you, but I hope that my quick impression was right. How have all your tests results gone? If it's in a post, I'll find out, but just in case.

Pat, I saw your PM - I'll answer it soon. Sounds like you need to take it a little easier too, huh? Don't need any more big scares from any of you!

To all those that are new, welcome! I wish I could be on much more than I am, but I will get in to the individual posts and see if there's anything I can possibly help with.

I'll try to get on a more regular schedule so I can keep up with everyone - there is so much going on, and I feel like I've been gone for a year already!

Love to all! :grouphug:

Hi Connie!
 

Hey sweetheart! So in China, MG is considered "curable"? How wild is that? Havr you heard anything from your docs? Any good news?

Isn't it sick that people that can't afford health care don't recieve it? I just do not understand. When I was in the hosp last week, this sweet little 90+ yr old woman was too weak to push her help button, but kept calling for help - luckily I heard and had my mom get the nurse...the sick thing is that the VERY NEXT DAY they were sending her back to the nursing home.......It was heartbreaking............:(

Please let me know how you are when you have the time/energy!

love,
Erin:D

Hi Becky!
 

Connie,
You continue to keep the faith. You are a very strong person and I admire your courage under such difficult circumstances. Know that you are in my prayers!
Huge Hugs to You,
Simon

Becky!!!!!
 

Yay! You're back Becky! HAve missed you!!! =) Really glad to have you back! Am also really happy to see your busy schedule! :D

Glad to see all of you getting better *looks at Erin too*

I'm glad you've finally found doctors who are willing to tkae you seriously. I've been without answers for close to one year and I can't imagine 14 years without answers. Geeez. Will be praying for you! LEt us know what the docs say!

Will be keeping you in my thoughts too! Know that you're deeply missed when you're not here. Do come and update us whenever you can!

Hey Erin!
 

Hi Erin, Yesss!! In China, the professor I saw (he's extremely well regarded there) told me if it was MG, he would say he can see results within 3 days of treatments in 99% of his patients, if not 100%. Some of the patients that see him are unable to walk when they are admitted, but come away walking! He also showed me many sms from his ex-patients, many who recover within few days of seeing him. So I do believe that its possible. However mine isn't MG, and he said if it turns out to be MND/ALS, its a trickier issue than MG cos even with traditional therapies, there aren't any cure yet. However, traditional therapies combine with western meds can help to slow the progression he said. So he's helping me to build up my immunity so I can handle it better! I was too weak when he first saw me. =) The docs there found it weird when I told them that MG was considered incurable in Singapore and in many other countries. HE said its impossible not to be able to cure MG. :eek: WAs just thinking, if the methods are taught to your doctors, wouldn't it be amazing??!?! I wonder what the results will be!

YEs, its absolutely heartbreaking too, to see people who need care go without the appropriate care. Its sickening to even think about how many there are out there. Met quite a few while I was in China, and one of them was this little boy, who's not even 1 year old!! His parents had to save for months, before the mom could bring him to town to get treated for his arm, which apparently, has turned blue. Imagine that! Both his hands were of different color.

So I'm really just counting my blessings, that I can still afford treatment, and that I have all of you here!!

Love,
Connie

Checking in...
 

Brrr its a bit chilly here in western australia, got down to about 1C in Perth,overnight,(33F) which is quite unusual. I'm sitting in my little unit,(3 hours south of perth) its about 12 inside,(53F), but I refuse to close all the doors and windows and turn the heat on yet, as its a gorgeous sunny day even if it is cold!!!

I'm well and truly back from my sojourn to the wheatbelt. Wow what an amazing time we both had, we went to many cemetries and caught up with long dead relatives. It seems we have many relatives because everyone seemed to have around 10 children, more or less!!! So just when I thought I'd taken photos of every relative in the cemetry, my cousin would point to another name and say they were related!!! It was great to see our founding Great great grandmothers and fathers, we even went to the origional homesteads, and were shown around.
It certainly tired me out, but I seemed to only have droopy eyes and slightly dodgy arms fingers and legs that didn't want to work properly.
It was nice to see all the green crops in the ground, mostly wheat I would say. If you head to my profile I will put up some photos!!
Hope this isn't too boring
Kate

Hi Kate,

I'm so glad you had such a nice time! I'm glad too you faired pretty well for the most part. I love all the family history stuff too. The last time my brother came back home for a visit we went to 5 different cemeteries in three different counties. We went to where my father's farm use to be which is only a mile from where I live. Went to my where my grandfather's & great grandfather's farms and ranches once were and other reletives farms as well. We had a wonderful time. I will check out you photos, thanks. Take care.

Hugs,
Pat

Really beautiful photos Kate...thanks for sharing!;) Pat

Alice,
A Steamy shower can cause him to exascerbate even further.
I'm so sorry he's having a tough time right now.
Much love Lizzie

Kate
Awsome pics ! So interesting, I love them.
Mary

Hi Lizzy, I know what you mean about having to take baby steps. Yesterday I tackled just one bottom kitchen cabinet. I put a pillow on a small step stool and parked it. I finally found my salad spinner that's been mia since last summer! One down, 11 more to go...but not today. Take care.;)

Hugs,
Pat

I know I'm about a page behind here, but that's what happens when you're out for a while!

Connie, I had an accupuncturist here that I was seeing that practice a Japanese form of accupuncture and herbal treatments. It was amazing and he and I had many discussions about the differences between western medicine and traditional medicine - if only they could use a blend of the 2 I really feel that so much could be different! I unfortunately moved and can't even kind of easily get to him anymore, but I really feel he was helping.

Erin, you poor baby! I read about you getting the implant and I'm glad for you on that, but geez! I guess we all need to be sending some stronger vibes to you to getting to that remission. If your doc does try to prepare you for that not happening, you just keep one thing in mind - many sights and MG specialists say 2 - 5 years after thymectomy and some even say 10!!! - And there's always the spontaneous remission as well. So don't yo give up hope! No matter what - you WILL get there!

Lizzie, it's so good to hear that you are getting around some. Any new miracles in the works for you? I still smile every time I remember your post about your heart! You are such a wonderful person, it was well deserved - and more!

Mary, how are you doing? any new developements for you? Any results on all the blood work yet?

All of you - gotta get off now, I haven't even had dinner and it's 9 pm here! - I miss you, and love reading the posts. Welcome to all you that are new, and I'm so sorry I don't have more time to spend tonight.

Love to all.

Hi Becky!
 

Hey honey! I have missed you! I am soooooo happy that you are getting back to normal! What a blessing!:D

I WILL NEVER give up on REMISSION - EVER! I know there is a reason for everything, and I have this for a reason, but I also believe in prayer and miracles!:D I am actually excited about getting either a port or shunt - that way I can have all of my lab work done through it! I am a bit nervous, but if I can handle the thymectomy, the port or shunt should be a walk in the park!:D

I think back to when I was really weak and thank God for my strength now! Every day! Every night! I am truly grateful for EVERY DAY on this earth!

THank you for checking in!

Love,
Erin:hug:

Hey!
 

Bump and checking in...
 

Hello to all,

I am having a very good morning and my eyes and legs are doing much better so far today, so I am happy about that.

Connie, I am sorry to hear you are not doing well. Hope your cheek heals quickly...ouch. Glad to hear you are doing a few things around the house, but do take it easy. Packing boxes isn't exactly a small task. I hope you are getting out for some fresh air. I know you enjoy that. Take care of yourself and as always I will keep you in my thoughts & prayers.

Hope everyone has a good day today. Take care.;)

Hugs,
Pat

It's me !
Got all my labs results, just had to redo 2 of them, because they couldn't prcess them for some reason, for vasculitis. They are showing what we already know, muscle wasting, malabsorbtion, neuropathy. Nerve & muscle biopies on the 28th are scheduled, & will go to the root of the problem, & give the diagnosis the doctors believe. But we all know what that leads to ......... More pred. basicly, I was told it looks like I have another neuro muscular diease on top of the Myasthenis gravis, that damages outside the junction.
Stay cool everyone !
Mary

Hi!
 

Pat: I'm feeling better today, the soreness is almost gone. Starting to eat again! Am so glad you're feeling great! Its always happy to wake up and find that your body's in a great condition!

Mary: Wow! ITs great to hear from you! Hmmm.. Am hoping the results turn out great for you, do hope that you do not have another neuro-muscular disease! Why are they suspecting this? Will be praying for you, do keep us updated on how it goes!

Hi Connie,

Glad you are feeling better and the soreness is almost gone. I'm still waiting for the day I wake up and find my body in a great condition...think that's going to be a very long wait. LOL Take care.;)

Hugs,
Pat

Grrrr, I'm having a bad day, trying to convince my body I havn't run the olympic marathon, just washed my hair. I'm also in pain..........but apparently thats in my head, because non of my drs really know what it is...........ah well tomorrow will be better.
Kate

Hey Connie, Thanks, I keep you in my thoughts & prayers too. Hope you are having a good day.


Hey Kate, Sorry you had a bad day yesterday. Where are you having pain and why don't the Dr.s know what's causing it? I hope you have a better day today. I'll be keeping good thoughts.

Take care & hugs to you both.;)
Pat

Connie and Kate,
You are both in my prayers! May God give both of you strength!! God Bless both of you!
Big Hugs,
Simon