My Journey!
 

Alright! Here's my journey so far. Lots of your stories have inspired me and encouraged me, and I just hope to be able to contribute to some who may be searching for answers, just as you guys have contributed to mine!

Warning: Its a long long post...

My symptoms first started in September last year, my fingers started trembling and I found difficulty in writing, and opening doors. Even pushing doors open started becoming difficult. I started feeling extremely tired, and attributed it to lack of sleep from working long hours. My left side started feeling numb and would wake up from sleep being unable to feel my limbs at all. My family started noticing it, and brought me to see a GP. The GP started testing my strength, and upon doing so, it was then that I realized how weak my left side had started to become. I couldn't squeeze his fingers at all, and I couldn't push or pull his hands away. My right side was still okay and he was extremely concerned at the weakness on my left side. He referred me to go to a larger clinic for diagnosis. I went to the clinic immediately, and was in turn referred to the emergency department of a hospital. I went, only to be told that as long as I could still feel another leg (my right side) its ok. I only had to go back when both legs are numb. =X And that was how I spent my 26th birthday.

Two days later, on the last day of september, after returning home from a client's meeting, I sat down by the roadside, feeling tired, and then realized that I couldn't stand up. Feeling scared, I called my friend who came to pick me up and sent me to the hospital.

Upon reaching the hospital's emergency department, I was unable to move my limbs, and couldn't even stand. I started having problems breathing and couldn't respond at all. I was trembling all over, and I couldn't stop it. That resulted in them admitting me and a hospital stay of about 2 weeks. There were various tests done, MRI of spine, brain, lumbar puncture etc. All showed normal results. But I still couldn't move my limbs without them trembling. Suddenly I found myself having to rely on people to do simple stuffs like eating (i had to have nurses feed me), turning myself in bed (i was grounded to the bed) and later on showering, changing, moving around. I couldnt chew, and would get breathless everytime I ate. It was only later on that I realized i could be having a crisis, as I had to be put on a respirator. No one suspected MG and no one knew what it was. The lumbar puncture left me worse off, as I couldn't even sit up in bed and vomitted everything I ate. Lost a total of 14lbs that week, which was about 1/6 of my weight.

I wanted badly to be home as I was sick of all the tests and nothing was being done, and my symptoms were still around. As there was nothing they could do, they referred me to a psychiatrist and sent me home.

The first few months, my emotions were like a roller coaster, and I simply just stayed at home. At the mention of what I was going through, would most often burst into tears. Was going crazy staying at home, yet couldnt get myself out (my legs are so weak that I hav to use a wheelchair). Was going crazy with all that I was bottling up inside. I even told the psychiatrist that I may be crazy since my tests are all normal, but she said she didn't think my symptoms were due to mood or mental stress. Lol. Thank God for that. Everytime after spending some time out of the house with my colleagues (who care enough to come and bring me out), my family would be complaining as I would come back looking like a dead fish and sometimes too tired to move myself at all. I would lie on the bed in an awkward position but yet not have the energy to even shift myself. They attributed this to laziness.

Its been almost 9 months since my since my symptoms started and I'm still without a diagnosis and not put on any meds. Needless to say, i myself have been the only one pushing for answers, wanting to know whats gone wrong in my body. None of my friends or family have been involved in the search for answers with me. Hence the daily visits to all sorts of site available to find out. My search eventually led me to this forum.

Its been an awesome journey so far, and I must say I've gained a lot though. It may sound cheesy but I've really learnt a lot. They always say perseverence is the key to success, but I do believe its also the key to happiness! I've found that giving to others even in my condition gives me a whole lot of happiness, and though there are things that I can't do, I find that focusing on the things that I can do helps tremendously. If there's something that I can't do, I stop thinking about it almost immediately, and then try and find things that I still can do.

Someone once mentioned, angels without wings. And I said, I'm walking without legs. I can now walk for short distances slowly, though most of the time I've to use the wheelchair as my short's extremely short. Haha. I keep focusing on the things that I have to do, and amazingly, I'm much happier. I still go to work on some days, in my wheelchair, and have gotten use to the weird stares that I get. If people stare at me, I'll just give them a great big smile and say Hi. :D They usually turn away in embarrassment. Am a lot happier nowadays, and people have come up to me commenting that they've never seen a happier person in a wheelchair.

Above all of these, I just wanna say a great big thank you to all of you who have contributed in this forum, it has helped me a lot, and though I'm still without an answer, I do believe that one day, I'll be walking and running again. You guys are an inspiration with all that you're going through, and I'll be keeping all of you in mind and in prayers. The world's a better place cos of you!

:grouphug:

Good for you Connie!

Although you're going through scary times, a positive attitude will carry you a very very long way :) I've found a sense of humour about the whole thing to be indispensable.

Brian

Hey Connie!
 

What an amazing story! The one common factor with ALL of us is that we were considered "crazy" b/c we were not able to do "normal" things.....So very sad.

I must say your sense of humor and upbeat attitude are amazing! I've seen a lot of people become really bitter and hateful after a while, so your story in particular touched me........

I too feel blessed and lucky to be here and am trying to turn a real negatie into a positive - as bad as I have ever felt, there is always someone somewhere feeling worse, so I keep that in mind..............


I've also learned to not take anything/anyone for granted - EVER! We have been given the rare opportunity to experience things from a different point of view and I do not take that lightly.........MY faith has also gotten me through the lowest points......I was very, very bitter for a while there and needed help getting through the dark times so I found a fabulous church and am so thankful!

I would like to do a "Day in the life of MG" for people who do not understand our disease....maybe it would help, maybe not, but if it helped ONE person understand then it would be worth it!

Hang in there!
Erin:D

Connie, I could feel myself in your story, what a strong person you are. Even though we are limited in what we can do, we can all find a feeling of accomplishment, in new areas. What a positive person you are, & a joy to know !
Mary

Your story is very similar to my story, I really feel for what you are going through. I went 15 months without a diagnosis but I can actually tell you that it can get better. I would do a little searching and try to find a good neuro in your area and have your dr. refer you. I was going nowhere with my first neuro because he wanted to wait and see if the symptoms went away. My second neuro was very interested in my case and finding a diagnosis. This site is an excellent support system ... so glad that you found it.
Take care ~ Melanie

Thanks Brian, Erin, Mary and Melanie!
 

Thank you for the encouragement guys!

Yes Brian, I do agree that humor is indispensable!! In fact it makes our lives much better off! Found a lot of it in the posts that all of you leave behind too. And thanks so much for all the wisdom especially the links that you post!

Thanks Erin! Your love for everyone around here touches me too. Am so glad whenever I feel aches in my body, as the aches definitely beat not feeling anything at all. Met someone who has been paralyzed from the neck down since he was 18 (he's close to 50 now), and I just feel so blessed that I'm still able to feel. Am so glad you found a fabulous church! My movement's limited so haven't been able to get to church for a while.. But there's lots of videos online to watch!! :circlelove: Whenever u need someone to talk to, feel free to drop me a mail! "A day in the life of a MG.." That sounds interesting.. It'll be fun to see what we all do in a day!

Thanks Mary, you're a great joy to know too! You are a very strong person as well, and your story inspires me. Let's all run together, and beat MG hands down! :trampoline:

Thanks Melanie, managed to locate some good neurologists, and am following up with them. One of them recommended someone overseas so may be flying over too. Anything to get my symptoms sorted out! :o

Connie, did they actually give you a DX of Myasthenia Gravis? Seems you are a fighter with a true spirit. Make sure you push those Dr.s and don't let them get away with "it's in your head" have you at least had a tensilon shot test? You sound like you need medication and or plasa exchange right away. I am glad you found this sight and hope you make many friends. This is a great place to share happy and sad days. Welcome! :grouphug:

Hi Joanmarie!
 

Nope, they've not given me a DX of MG. Thanks so much for your encouragement Joanmarie! Guess this MG brings out the fighter in all of us.. :D

I've not had a tensilon shot test, my MG fluctuates a lot in one day as well, so I'm considering working myself out so that when I see my neuro, my condition's at its worse so that he can do his best to find out. I've only done an emg and am waiting results on my antibodies test. None others related to MG. But am also in the midst of finding a good neuro to go to as my current one is not keen to work on a diagnosis cos he feels it won't help me. I just finished a one hour conversation with my friend and now my mouth feels so tired. Lol. Do any of you get tired from talking??? I never used to feel tired in the mouth from talking.

Wow Connie, what a lot you have been through, and to be able to remain positive is great

Kate

Hey Connie,

I sure hope you get some answers soon, you certainly have been through so much. I too went a very long time without being diagnosed because of one incompetent doctor. Once I was referred to an excellent caring specialist, I was diagnosed and treatment followed. I pray this will happen for you as well. You have a wonderful attitude and sense of humor. I am sure you have touched more lives than you will ever know. Hang in there, we are all pulling for you.

Take care,
Pat

Hey Pat!
 

Dear Pat, Thanks so much for your encouragement!! =) This board has helped me a lot too, for its really a place where I can share all my thoughts and yet no one would say I'm crazy. =D

I know what you mean Connie, I love this place too! Take care of yourself and good luck with finding a new neuro. Things will get better soon!

Pat

Hi Connie,
I can't wait for you to get to a good, caring neuro. I HATE it when they pull this wait and see bit! For one thing, if it was their body I guarantee they wouldn't just wait and see! UUUUHHHH!!!! For another, there are conditions with your symptoms that if caught early enough and treated can be stopped from turning into something more serious and permanent!

I'm really concerned about two things in your post - Numbness and one sidedness. There are so many conditions that can cause these same symptoms. It sounds from the LP and MRI's they were looking at MS which would make sense, but there are many others as well - don't let them stop looking!!!

The first neuro I had sent me to a psych as well - he cracked me up. After I told him what "brought me" to him, he said " Oh, I see - they can't figure it out so they send you to me! You're not crazy! Just depressed with good reason with all that's going on with your health!" He was so tired of Neuros telling perfectly sane people that they had a mental problem causing their neuro symptoms. I loved him, and he reaffirmed what I already knew, but my family and friends needed to know it!

I'll be sending some strong, positive thoughts your way. Please keep us up to date on your new neuro, tests, and progress as well as how you're doing, ok?

Lots of Big Hugs and Loves to YOU,

Hi Connie!
 

Just checking in to see how you are today! I know how frustrating all this "hurry up and wait" business is.............and how dr's (especially specialists" have super huge egos..........I tell my docs all the time that it is not about their ego - it is about making me WELL again and if they have a problem with that, then they are the WRONG dr for me......it actually works...they are not used to someone calling them on their "tude" - LOL!

Let us know how are you doing when you have the time/energy!

Big hugs!
Erin:D

I can relate!
 

Hi Connie,

I just wanted to let you know that I totally feel for you when you say that you have to make yourself as sick as possible before seeing a neuro. I do exactly the same thing! As if being sick isn't bad enough, I feel like I have to make myself even worse. The only good side is that in my efforts to make myself sicker I've grown to know more about this disease I have. Unfortunately, most neuros just kind of dismiss the symptoms anyway, one by one. Still, I know now that squeezing my eye makes it droop as do hot showers, walking AND talking makes my breathing worse and will set me off sometimes for several days of fatigue, a couple of diaphragm exercises makes breathing worse, a couple of transverse abdominal muscles makes my stomach pop out to the point where I look 9 months pregnant and makes breathing harder, doing a few tricep exercises makes them weak and shaky and my arms will shake sometimes for the rest of the day, lying down when I'm really fatigued will make my oxygen saturation go down. And all that works unless it doesn't. :confused: Aaargh! This disease is so random!!!

I think Annie gave me this advice and I think it's really good: take as many pictures as you can. I still don't have a diagnosis, but I notice that docs seem to take me a little more seriously.

Anyway, I'm so sorry you have to go through this. Keep trying, keep trying, keep trying. That's what I tell myself, at any rate. I hope you find your answers soon!

heyyy Pat, Becky, bluesky
 

hey all of u, thanks so much for the encouragement. =)

i cant type much now, am on a drip in e hospital i went to. the docs here are pretty confident of treating mg, but they just want to check if its really mg or something else. they've narrowed it down to 4 illnesses, namely mg, some thyroid thing, muscle dystrophy and one other which i can't quite recall. he's one of the top neurologists in this hospital, and he's mentioned that he's 99% if not 100% confident of fully treating mg. just have to pray that its mg cos the others aren't that easy to treat.

i'm having a tensilon test later on, so shall see whats the result. the docs here are really caring, so can feel that i'm in good hands. they mentioend that the tests i did in Singapore are all very surface tests, as in they're neither comprehensive nor detailed enough. so they have to redo quite a bit of tests... the neuro mentioned i have quite a bit of muscle wasting away on my chest, just below the collar bone. he says the two muscles there are practically gone. am quite surprised cos i hav not noticed it b4.

won't be able to check in too often as i'm warded in e hospital, but will check in whenever i can to hear from all of ya.

thanks so much for the support

:grouphug:

Connie,
Hang in there young lady! We will keep you in our prayers and believe that the Doctors will find out what is going on with you. Keep your good spirits and know you are in our thoughts and prayers! Keep us informed when you can.
Bless you!
Simon

Hi Simon
 

Hey Simon, thanks for the encouragement! Finally the doctors here are doing all they can to help me, and most prob's the tensilon test would b done later on today. They mentioned a muscle biopsy too, as my emg showed abnormal results, which they mentioned is different from what an emg of someone with mg would show. i have quite a bit of overlapping symptoms so they're doing all sorts of tests to be sure. i'll update all of you soon!

:popcom: :Dancing-Chilli:

Connie,
Take care and keep us posted. Keep the faith!
Simon

Hi Connie!
 

Test results!
 

Hi Dear, they have sort of given me two possible diagnosis, one of which is ALS, and one's MND. They're both similar, in the sense that they both seem to be fatal and progressive. MG sounds like a much better autoimmune disease to have, but the neuros seem to have crossed it out. I'm now back home, after more than a mth in the hospital. When the docs told me it could be ALS, I was kinda numbed, and had lots of questions racing through my mind about 20mins after that. Lol. Am still pretty optimistic about everything, not thinking too much about it. After all, they still have to monitor and see as its quite a grave diagnosis to make. So am keeping my fingers crossed and hope that I get better with the tonnes of vitamins i have to take!!

don't you love the wait and see attitude! and it's very treatable-but you life will really suck for awhile as dr figures out what works best ,side effects,etc. i did agree with dr that it was better to have a maybe than an outright fatal disease! but the "oh don't worry we'll get you feeling better sometime sooner or maybe later thing" makes me want to scream /and i have in private . i know hubby is really worried and tries not to show it but the rest of our lives he may end up being my caregiver if things gi south.enough venting for the week! i hope you all have a great w/e!!:)

Hey Connie
 

Hi Connie,

I'm sorry to hear that this is what the doctors think you have. ALS and MND are two different names for the same illness. When I first started my journey with the MG symptoms, it was a concern that it might be ALS as well as my symptoms do not affect my eyes, really, only my 'bulbar' region (throat, tongue, facial muscles). After I had a blood test, CT scan and SFEMG and repetitive stimulation test, the docs. said they were sure it was MG (I also have a thymoma).

I also have a lot of twitching as well, mainly in my fingers. That twitching started before taking mestinon, and isn't part of MG so it's still sorta a mystery. My neuro. thinks that it might be from the thymoma, as they can cause other overlap syndromes.

Have you had a CT scan, just in case? You're also very young to have ALS. Another thing that you mentioned is 'numbness.' That's not a symptom of ALS. It does not cause any loss of sensation or feeling. Have they tested your B12 levels? I know it sounds like not a big deal to have a B12 deficiency, but it can cause loss of feeling and the sensation that you don't have legs. It can be disabling for a while if it's left for too long, but it IS reversible.

You and I are almost the same age. I think that you mentioned that you celebrated your 26th b-day sorta recently. Let's hope that it's not ALS/MND. But if it is, you certainly have a very positive attitude and that'll definately help you. I've met many people with ALS, and many of them live for a very long time. I know a few that have been living with the illness for 26+ years. Also, being diagnosed at a young age is a good sign that you'll live a very long time. As many of those people have said, ALS doesn't have to be fatal; it's all about how you decide to live with the illness.

There are many other illnesses that can cause loss of feeling and muscle weakness. Let's hope that they exhaust all avenues before giving you this diagnosis.

Take comfort that you're not alone, not matter what things turn out to be.

I wish you luck:hug:

Nicky

Hey Connie
 

Your story really touched me. Your so brave.

You may have seen my posts where Im diagnosed only to have it taken away.

All I can add is keep the sense of humour as it will see you through the dark times! I had an off the wall sense of humour before its even worse now!

Stay strong and keep fighting. Its really hard, some days you just feel like giving up. On those days call for time on the fight, the next day when you are ready for it get up dust yourself off and start again! If we all keep chipping away at it we will break down this wall that stops Drs saying yep its myasthenia gravis!

I can't offer you anymore than my support,

Take care
Rach:winky:

Hi xmas!
 

Haha.. yes.. after all they work on a process of elimination so its tough while they try everything on us.. But still, its better than them not doing anything at all! This forum is a great source of encouragement as we know we're not alone! :p All the best to a great week ahead!

Hi Nicky!
 

Thanks so much for sharing Nicky! Is your MG under control now?

Are there different kinds of MND? Cos there seems to be quite a few kinds of MND that the doctors shared with me. Yes, mine had some bulbar region symptoms, but it wasn't very obvious except that my tongue trembled a lot whenever I had to stick it out for the doctors to see. The numbness which I talked about, was more of stiffness in the limbs, i can still feel different temperatures and the needles they poke me with. Its also the twitching of muscles which have developed last month. Initially I didn't really see the twitching, but now I'm seeing it everywhere! Especially on my arms and legs. But then, maybe its cos I'm wearing shorts more often now. Lol.

I have done CTs, lots of bloodtests, which all turned out fine. Even the lumbar puncture was ok. My vitamin B's okay as well, but doctors are suspecting malnutrition, as I keep losing weight. Its weird as I eat a lot~! Am not sure where all the vitamins go to.

Initially the doctors gave me 4 possible diagnosis, which they've narrowed down to MND as my results for all tests were great. The emg was sort of the deciding factor, as my results showed nerve damage in several areas, the neck, fingers, legs. Yes, I'm only 26 this year, and that is why the doctors are hesitating to give the diagnosis. So its another 6mths of monitoring. Somehow am not too worried about MND as well, am sure that it will be alright! It definitely helps to hear all these wonderful testimonies from you. Have only met one ALS patient who was warded in the same ward as me. It helps to know that he knows what I'm feeling. :D No matter what the diagnosis is, I'm still gonna live life to the fullest.

Once again, thank you so much Nicky! :hug:

Thank you Rach!
 

Hi Rach, thanks so much! We're all fighters in our own ways. Have seen so many of you here! Yes, have seen your previous posts, and I do agree the waiting period's tough sometimes. On certain days, my body just refuses to function properly. These days, I usually just take a great movie and watch it in bed. =D

Yes, my sense of humour is becoming quite weird sometimes. Haha.. After all, its great to just smile at everything.

Hi Connie,

There are four different types of Motor Neuron disease. Only voluntary muscles are affected.

The most common is ALS (amyotrophic lateral sclerosis). It affects both the lower and upper neurons. There are fasciculations, wasting (atrophy) and weakness of all muscles, except for the eyes.

Progressive bulbar palsy also involves both upper and lower neurons. Symptoms start in the facial muscles (slurring, swallowing difficulties, etc.). There are also fasciculations in the tongue and face.

Progressive muscular atrophy only affects the lower motor neurons. Weakness, 'clumsiness' (lack of dexterity) and atrophy occur.

Primary lateral sclerosis only affects the upper motor neurons. There's weakness in all muscles, but there is no atrophy.

I hope that helps a bit...I think that docs. feel that they have to say that the illness is fatal, but it really doesn't have to be. I can give you a website that's really excellent in terms of getting to know other people who are living with the illness. There's also a forum on this site, but that site's pretty awesome too...

One thing I'd recommend, and this will sound really weird, is a high/average-fat diet (or a traditional diet of eggs, milk, butter, things like that). Keep taking vitamins, but don't limit your intake of fat, even animal fat. There's a lot of research that shows that low cholesterol is bad for neurological disease. I think it's because you need adequate cholesterol for nerve-to-muscle communication. Apparently, having low cholesterol predisposes people to developing neurological diseases (including MG). Maintaining a high-fat diet increases lifespan for people with MND and other problems like Parkingson's disease.

It might also help you gain weight. I know that for a long time, I was limiting my intake of fat because I thought that my 'poor' diet was contributing to all of my health problems. When I started eating the way I used to again, I started gaining weight and feeling much better.

By the way, I'm no doc., so sorry if I'm jumping the gun here!:o....When I was concerned that I might have ALS, I did hours and hours of research on the net to see what I could do to help it. The high fat thing was one thing that really resonated with me, made sense on a lot of levels (apparently, many of the people who get MND are athletic or fit), so I was like, 'bring on the BLTs!':D

Good luck with everything and PM me if you want the website! :)

Hi Connie!
 

Hello sweetheart! I am so sorry you are going through this. Your post made me cry, b/c you are so very BRAVE and UPBEAT! It is amazing to see how people deal with adversity - you are a shining example of true bravery! :D

How are you doing TODAY? Are you feeling stronger?

What do your docs have planned for you now?

I wish there was something I could do or say to make you feel better. Know that you are in my thoughts and prayers!

I stay say 09 is gonna be our year!:D

love,
Erin:D

Hi Nicky!
 

Thanks for the summary Nicky. There were lots of sites and the amount of info was just overwhelming, but they kind of repeated after a while so gave up. Mine affects upper and lower neurons, find it hard to open bottles, been dropping things, whereas for the legs, i have this unstable walking gait as find it hard to control the way i walk. its like i sway from side to side.

Have been eating a lot, but my weight's still goin down. The fasciculations are driving me crazy today, it makes resting so difficult. May just take a video of them to post up. Lol.

Haha.. I ain't exactly fit or anything, had asthma as a child, had ovarian cysts which had to be operated on, but have been swimming and running to build myself up after the operation. This kinda led to me neglecting the earliest symptoms which appeared in my left hand. Thought I was just tired or clumsy. Some of the sites also mentioned cramps and pain, and I've been experiencing it for the past few weeks. The pain deep inside simply irks me, feel like pounding on the spot to make it go away.

Thansk so much for everything! :hug:

Hi Erin!!
 

Its sooooo good to have you back babe! :hug: Missed seeing you ard when I was back...

Thanks for your encouragement, am trying very hard to be brave too, and not think too much about everything. Am not feeling very good today, arms aching badly, and like I mentioned to Nicky, the fasciculations are driving me crazy. That word's a mouthful and I still have to paste it cos the spelling drives me crazy. Lol. I've been lying down to rest, and its like the muscles are having a performance, jumping up and down.

My docs are letting me rest at home, with instructions to return if my condition deteriorates or if new symptoms pop up. My next appt's 6mths later, and I'll have to do another emg then.

My plan for myself though, is to try and exercise, and get my strength back by increasing the distance daily. Haven't really succeeded, the swaying from side to side happens after about 200-300m. On certain days, its better, on others, i wake up feeling stiff and hav cramps throughout the day.

But... All of you makes all this much more bearable! Its so amazing to find people who understand. :D I've sort of given up telling friends abt what I feel perhaps when I'm more ready I shall do so.

Yes... 2009 is gonna be our year!

:circlelove:

Connie,
You are such an inspiration! Keep the faith and let us know how you are doing. We will all believe that 2009 is our year!!!
Big Hugs to you,
Simon

Hi Connie,

I am so sorry for all you have had to go through and still not get the answers you were hoping for. You have such a wonderful attitude, are so compassionate, great sense of humor and a terrific young women. These will take you far in your recovery. My thoughts & prayers are with you. Take care.;)

Hugs,
Pat