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!!

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

Nicky

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

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! All the best to a great week ahead!

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. No matter what the diagnosis is, I'm still gonna live life to the fullest.

Once again, thank you so much Nicky!

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!....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!'

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

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!

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!

love,
Erin

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!