LukeL

Hey Luke, any luck on your end? Did you find out what's causing your symptoms? I am still in search ....

Hi Luke,

I was hoping to hear that you might be doing better or found a better direction. I am struggling with exactly the same symptoms as you, but now short of breath. I have my 5th or 6th EMG tomorrow. The anxiety for 3 years with this is almost killing me. Keep looking for answers. Any update appreciated

....continued from previous....

Just wanted to drop you a line and let you know that there are a few people out there like you and i that never find out what is wrong with them for a really long time! Not sure if it is the right decision or not to spend all your 401k money but i definitely took a different approach to saving and having fun. In some way, trying to do more today as opposed to "later" has been fun. I would highly recommend it. I will be honest with you, on some of my recent trips i felt way better and more fit than i do today... I think there is a psychological component to all of this as well.

Although i am in canada, i don travel to houston quite a bit for work. If you'd like, we could meet up one day and complain about how shitty it is to be undiagnosed.

Happy holidays / Merry Xmas! Good luck with everything!

Cheers, Matt

Luke,

My name is Matt, I am 36 now and for about 4-5 years now i have been having symptoms that i thought were pointing to ALS. I saw many doctors and had all sorts of tests. To this day i don't know what is wrong with me but I can definitely say that i don't feel anything like i did before all of those symptoms started. I was a very active person, played lots of sorts and would consider myself pretty energetic. Today, it's all the opposite, I feel drained, hands get stiff from typing, legs get super tired from really nothing! Yet, despite what i would call a progression of symptoms, doctors find everything is normal. I twitch all over and cramp up regularly. I feel physically limited compared to before. I can find common symptoms when reading on ALS, CFS, BFS, mitochondria disease and lyme disease. However, no diagnosis for any of these....well, except the chronic lyme disease thing...but that is another story/myth/ to deal with. you can check out LLDM doctors and see for yourself

Hey luke its johnskip I know your story im there now and im an athlete too undiagnosed still I know how hard it is to live your life with these symptoms text me at 2672558383 anytime buddy we can give support to each other im here dont hesitate to call or text

Hi Luke, I was wondering how your appointment in Houston is going. I went through the same process a few months ago (though for a non-ALS diagnosis) and know that it is long and overwhelming.

Hoping you made out ok at your appointment. My best to you

Hi luke how are you I just want to wish you the best on your appt next month im awaiting a diagnosis too it sucks im fromphilly and been to 6 neouros tomorrow will be 7 my name is skip just wanted to introduce myself I have been following your post

I understand. The diagnosis progress can take a while because they have to rule out other things and then you have to meet the criteria for Als. Try to live life now, easier said then done, I know. I'm going through it myself.
I'm still holding out hope for you

Struggling. Awaiting my appt next month with Appel. Trying to "take it one day at a time," but my kind seems resistant to the cliché. This whole concept of terminal illness seems impossible to wrap my head around right now. I'm 34, healthy and extremely active...a lot of "why me" right now. I want to hang onto hope but my symptoms continue to progress...twitching everywhere now. Praying I can find a way to come to terms my likely diagnosis b/c there's little time to waste.

Thanks for checking in...means a lot

How are you doing?

I truly know this is a difficult time for you, I'm so sorry. If you want read some of my old threads. The diagnosis process is hard but being told you have ALS would be harder. Wishing you my best.

I more then understand how the doctors make us wait until the progression meets the
Criteria for a firm Diagnosis. My fasci started in 2011, according to my neuromuscular
Als specialist, I am not weak. (Not clinical). I feel weakness all over. It good you
Only feel it in your arm. I am still holding hope that it's something treatable for you!
Wait for your appointment and try not to worry too much for now. You should have PM
Abilities after 25 post?......If I can help or you just need to vent , feel free.
To contact me.

I can relate to your thread. My best to you.

You will find that you cant win here therefore i keep quiet.