[ConnieS]

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!

Originally Posted by xmas 25

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? thanks! hope you're feeling better!

[ConnieS]

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?

Originally Posted by Pat 110

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

[ConnieS]

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

Originally Posted by ras1256

OK. Time for another update.

I've pulled off a 40 hour + work week, but I don't think I want to do that again for a little while. I was so tired Friday night!

I have also done work in my hubby's office, done some cleaning, alot of visiting with my in-laws and neighbors, played with my dogs on a daily basis, and walked my 3 acres a bit! I'm loving life again, but do still have a few residual problems. I don't think the maintenance dose is high enough for me, so I got some Lysine to help boost it - my rash is much better, but I still get little sores here and there.

ERIN - Lysine helps with cold sores - my daughter was getting one and I gave her some of my Lysine and it was much less severe than normal - and she didn't even take it as long or as much as I suggested!

My energy is way better, my strength and balance are way better, and my peripheral vision (which I didn't even realize was bad) has improved a lot. I still occassional get the heat sensation, and of course my MG isn't back under control completely yet so the heat still wipes me out big time!

I was thinking about backing out of the MRI and appointment with the MDA doc, but I'm thinking I will go ahead with them - just to be sure! Maybe if they will go along with this viral aspect, they will recommend the proper anti-viral dose for me and I can get the rest of my symptoms completely gone! I'm getting greedy!!!!!

Mary, I'm so glad your back is feeling better, and I couldn't find any info on how an EMG might be affected by TM. I'll ask the neuros when I see them the end of this month though.

Connie, it's so good to hear you are getting such thorough care! I love that the docs there aren't looking at just one thing, but looking for any and everything that may be causing your symptoms!

All of you, I think of and speak of you often. I tell everyone I know about this site and how brave, positive and helpful you all are. I miss being able to hop on every day to keep up with everything! This is this most wonderful bunch of people I've had the pleasure to associate with in my life. I am truly a very lucky and blessed person, and you are all a big part of that.

I'll be hoping for great care, wonderful resolutions, and strength for all of you!

SMOOCHES!

Becky

[ras1256]

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

First, I've missed you all alot - 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! , 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?

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!

[erinhermes]

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

Originally Posted by ConnieS

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!

[erinhermes]

Hey sweetie! Am I happy to hear from you! It is so great that you are back doing what you love! I am so glad to hear that! It is an inspiration for all of us!

As for the whole "ordeal" - I was feeling really weak and my feet and hands started peeling like crazy, so I saw Dr. I, and he said I was having an allergic reaction to the Imuran and took me off that day (Thursday) ans bumped my pred to 40. Well, I still kept getting weaker and weaker, so I went in Monday - my eyes were all over the place and my head was hurting so badly that he wanted me admitted that minute. I have a tendency to "crash" pretty fast. It was wild! Then I was told that the plasma exchange would probably do more than my "usual" IV IG, so I agreed - YUCK! THat needle is HUGE!

I was kept on the neuro/tele floor all the time,as my heart kind of goes wout of whack sometimes......thought I was going to go out of my mind.. I know I drove the nurses crazy, cuz' I kept taking tele off - had an IV in my left forearm and the jug cath in, so sleep was out of the question........

How are YOU doing?

Big hugs@
Erin

[TxSimon]

Originally Posted by ConnieS

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!

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

[ConnieS]

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

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!

Originally Posted by ras1256

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

First, I've missed you all alot - 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! , 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?

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!

[ConnieS]

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. 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

Originally Posted by erinhermes

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

[ConnieS]

Thanks Simon, for all your encouragement and support... You're such a kind person, and an inspiration yoruself!

UpdateS!
Am doing ok these few days, lesser fasciculations than that day, thank God! But nearly had my first fall today, while I was out. HAve been practising walking, (I'm able to walk for short distances), when suddenly my foot gave way and I nearly fell. Thank God my mom was beside me and she pulled me up firmly. Think i scared her. I'm still not sure what happened, which foot gave way etc, but am just glad I didn't actually fall.

Am finding it harder to type now, somehow my fingers keep missing the correct letters and I end up typing weird stuff. Lol. Found out that there are programs to enable people who have probs typing to type using their mouse, but somehow think I'll still insist on using the keyboard, for as long as I can...

Have been trying to stretch myself more, especially my fingers. My limbs seem to be getting stiffer, but am trying not to think too much abt it. Just use them for as long as I can, and think about the rest later.

How's everyone doing?