Als

[lhagsjr]

I felt compelled to write this. ALS is really a disease that is not on the radar of the politicians in this country. Before my symptoms I knew NOTHING about it. I only even heard of it because its named after a baseball player and im a big baseball fan.

Its quite pathetic that I have 2 shoulders that are completely atrophied which causes both my shoulder joints to SNAP with any movement. They are completely not protected anymore and do not receive any support. My ankes, knees, kneck, and even chest also snap and pop due to the muscle atrophy. In additon, I have suffered from fasiculations for almost 2 years now. My quad muscles are almost completed wasted away. My tongue has a different look to it.

My EMGS(s) and my muscle biopsy do not point towards ALS but they are also far from clean. I have seen 3 neurologist(2 of which are ALS/Neuromuscular experts) who also dismissed me.

So why do I continue to lose muscle on a weekly basis? Im 30 years old and active.

Ladies and Gentleman, I have ALS. There is ZERO doubt in my mind. ZERO. The main reason is because my sickness is progressing. Each week I notice less and less muscle. I get more exhausted at night and go to bed earlier. Im a "lucky" one I guess my progression is slow. Since Ive been experience twitching for 2 years and I dont even have a diagnosis.

I know some day, probably within this year the Drs will finally have to admit they were wrong and give me the diagnosis. Its really quite sad. Why did I have to live with this for 2 years by myself? Because my family believes the doctors, and I can eat/sleep/walk/talk they dont even consider ALS a possibility.

ALS is a very cruel disease and I feel very alone.

Thank for letting me post this.

Sincerely,
Lou(29 years old from Philadelphia,PA)

 

[lhagsjr]

Also, please note...

Im in no mood to here Wright tell me that I dont have ALS. I know he means well because he tells everyone they dont have it. However, he has yet to give me something to point towards what I have considering my symptoms. Im not looking for sympathy here either, just a listening ear. Thanks, Lou

 

[wright]

Just for the record, Lou . . . I don't tell everyone they don't have ALS . . . just those that don't have any tests and/or symptoms that point in its direction.

If you want to have ALS, then so be it. I guess you know more than the ALS specialists, which is amazing because you never went through 4 years of medical school . . . didn't go through residency . . . didn't do any fellowships . . . etc.

I'll announce to my medical students next week that they can all quit medical school and just "google" their way into medicine and then I'll look for another line of work.

I guess you haven't read a thing I've told you when you ask me; I have given you plenty of other possibilities, all of which can be progressive and explained by your symptoms. I would also still like to know why you think that ALS is the only progressive, neurological disease on this planet? If it was, then it would be pretty damn easy to diagnose.

P.S. Considering you don't have weakness (that is what you have told me and others on this forum), then you have the only case of ALS without weakness that has ever been recorded.

P.S.S. I want to help you, Lou . . . but you can't help anyone that doesn't seem to want it or will listen.

 

[wright]

Something else I have to add:

You told me that your EMG's have been normal, except for maybe a query of myopathy.

You also told me that your twitching was getting better and was only happening for a few minutes a day.

 

[olly]

lou

hi lou.
i just wanted to say i am so sorry to hear you are still suffering,i really feel so bad for you.
for some of us there is no clear answer as to why this is happening to us ,or for the doc,s to give us a clear diagnosed.
i have a diagnosed of mnd after several years ruling out everything,but no definate diagnosed of pls/als.
i have umn involvement but only lmn in the form of hypotonia,except for some atrophy in my left foot/ankle that i think may be disuse atrophy due to the hypotonia.
i have to say i used to get alot of fasic,s in my upper arms,shoulders and back ,these areas are rather thin. and i do get joint contractures in my shoulders.
my neuro told me in some cases a diagnosed is only 100% reached on autopsy,i know this is the case for pls and that during life it,s a clinical diagnosed they give.
if the atrophy is so bad why are they not finding the cause?
you sound like you do have fatigue,do you have any definate weakness in the areas with the atrophy?
even with the hypotonia in areas that have no visiable atrophy there is definate weakness,like my torso area.
i really hope you find some answers soon , i know how you feel.
i will keep you in my thoughts and prayers.
take good care.
caroline

 

[hopingforthebest]

sorry Lou

Dear Lou

Again I will tell you how brillant Leo McCluskey from Penn has been with diagnosing and currently treating over 800 active ALS patients at the Penn Clinic.

I am sorry that you feel so depressed about "not" being diagnosed with ALS. You are a young man. You mentioned children and a wife? Please, let me speak to you as a mother of two men 34 and 30. Please listen to what Dr. McCluskey tells you. He is correct and maybe he has suggested a different type of specialist for you to see.

Every post you have written has broken my heart as a mother but each time you say not "ALS" I rejoice for you Lou!

See your internist and ask if you can begin a good cardio program at the gym and as the ad says "just do it"! You will feel better. But of course clear yourself with your primary care physician.

LIVE LAUGH AND LOVE! Those babies/children grow up too fast. Don't waste another day Lou. God bless you!

Patty

 

[RR15]

Hi Lou,

I understand what you are going through. It helps to hear someone else speak like that as I sometimes feel simply like complaining on this forum - not to discourage anyone but for the sake of catharsis. I just feel so alone, upset and bitter. I don't know what is going on with my body. I am a male in my 30s as well. I have always been an athelete and now I find it difficult to work out. When I do, it seems that I lose muscle instead of gain it. It is SO FRUSTRATING to me. I want to do so desperately what I like to do - and that is work out, go for a 5 mile run, etc.

Sorry to vent, just want you to know that I feel for you as well. It helps me when others vent a bit which I appreciate. It makes me feel not so alone with my frustration. I wish you only the best.

 

[CindyM]

This reminds me of the time when my Mom was being diagnosed with Alzheimer's. There are no tests for that disease, either, except to rule things out by process. And the mind does not go all at once, just like muscles don't. So we would take her to the doctors and she would seem OK and they would say "normal aging" or "stress." But by the time she was asking me who I was, I knew.

We finally decided that it did not matter what you called her disease. regardless of weather she actually had Alzheimer's or just AZ-like symptoms, if it was affecting her life then we would proceed like it was the real deal. By the time she could not find her way home from the corner store, the docs agreed. But we'd set up all the supports for her anyway by then, because we had to.

So let me ask you this: how would your life be any different if your docs agreed with you, Lou? Would your muscles become stronger or weaker? Would they offer treatment that would fix your body? If you truly believe you need to prepare for a shortened life, then get busy, man. Don't wait for them to confirm things. Start writing letters to your kids so they will have something to remember you by, pay off those bills so you don't leave a lot of debt, open a funeral account.

The way I see it, you have 3 choices here: believe the doctors and live your life; do what you need to do in case they are wrong (or in case you get hit by a truck next week,) or keep doing what you are doing now. But if you are like me, action of any sort will make you feel more in control and less like a victim of the medical system. JMO. Cindy

 

[chris_uk]

Lou

We all know what your going through here all of us, but having a go at Wright is not the answer my friend.

We are lucky to have someone on here that no only knows his stuff but is also kind enough to keep answering our questions.

So where i do feel for you totally, listen to the advice thats on offer here, its very good advice

Chris

 

[Blizna]

Lou,
you definitely have some kind of disease, but its not ALS. ALS is disease of weakness and if you are 29, twitching 2 years, the chance is extremely, extremely low.

Muscle wasting and fasciculations can occur with many another diseases. What about myastenia gravis? Neuropathies? Neurological (also the worse one form of lyme disease? Spinal cord compression..?

What pointing totally away from ALS is absence of weakness. Im not affraid to tell, that not even one patient with ALS have 2 yeas fasciculations before any weakness appear.
If - in extreme rare cases - fasciculations before weakness and atrophy, those follow in months.

PS: Palmitoyltransferase II (CPT II) deficiency causes twitching and muscle wasting. The guy there on youtube describes what you and has been Dxed with this.
YouTube - Broadcast Yourself.

 

[awieleba]

HI Lou,

I understand where you are coming from COMPLETLY. I am in the same boat. Told no als, but have muscle thinning everywhere and fasic's. I even have them in my feet, I can feel but I see them and they dont stop. The muscle in b/w thumb and finger is smaller and notable dent, same in feet, knees-etc. Joint poppin all the time. My quads are all but gone too. SO, I of all people get it. I had emg and biopsy. Emg clean, some issue's with biopsy but neuro not concerned.

I felt like you just 2 weeks ago-100% sure that I had a slow progessing form of als. **I have prayed and thought logically about it and have decided that I may not have it. Am I sure, no way. I assume that I have some strange muscle thing going and it is real. I do have weakness as for as exerise and not being able to play tennis BUT, I can do everything else. I just carried my 25 pound baby in one arm and a load of bags in the other up the stairs! It was hard, but I did it. I cleaned and scrubbed my floors, I go to the grocery store, I cook dinner...etc..you get the idea. ALL while my feet and calfs are twitching. ANd my hands get so crampy feeling that I will drive with my wrists sometimes. MY ankle feels sprained all the time and my knee's give out and thighs always feel weak and my back hurts, I could go on.

I have resolved to living and thinking that Yes, I have something. But I can spend good time with family and friends right now! I cant waste this time becasue IF a time comes when I cant get around I will regret it. I live day by day and week by week. I dont go to the future alot. This has been a HUGE mental strength for me, just this morning while watching my foot twitch non stop, I wanted to cry but I just let it go. I dont know about weakness, If I wear high heels my foot is in pain, so I dont wear them. I guess, I gave up trying to find a diagnosed and I feel that if or what I have will stay the same, get better, or get worse and I will only know in time. I have bussied my self so many other things.

I feel for you and I know how you are feeling, and Ifelt alone a few weeks ago but since I stopped walking around like I was dying and started living--I feel great. My mom asked me if my body was feeling better because of all I was doing and acting. I told her no, I am not better and in some ways worse with fascis and aches but I feel better emtionally. It has made a big difference for me. If you want to pm, then go ahead and I can share some of the things that snapped me out of it. ONE, being that I will not let something or someone change my personality and who I am. Just becasue something tragic happens to you, it does not have to define you and that is what WE have been is defining ourselves through our symptoms.

I have alot to be worried about with 3 young kids! And this makes me value them and everyone in my life more. I have become a better mom, wife, friend, family person. I have started making photo books and journals for my kids ( i would not have 'gotten around' to if not for this) I have applied for a life insurance policy. it is not fair, but I am just glad to be here!

take care and be at peace (hard to do)

april

 

[lhagsjr]

I nicely asked...

If I could just post something where I wasnt immediately attacked by Wright about how Im not sick and I dont have ALS because Im the one living with this ravaged body. However, it became clear to me that is not possible. He has completely taken over this forum. Which is hard to understand because he response to everyone is the same, " Everything you are telling me points away from ALS." etc, etc.

How can you say this without even physically seeing any of us?

 

[Al]

It's quite easy actually. I do it all the time myself. There are certain criteria that are even found on this site if anyone cared to look first that define what is and isn't ALS. Just having twitches and a coated tongue doesn't mean you have ALS. There are a dozen diseases that look similar. Wright or myself or you could say to everyone new here, yup you got it you're gonna die. Or maybe you might have it and should get more tests. Or one could say no I don't think you've got it from all the research I've done plus the fact I teach medical courses to doctors and nurses at a well known university so I'm not a dummy that read 2 articles I googled on twitches.I'm not going to allow this to become a peeing contest. If you don't like Wright, don't read him. Just like I don't read the whiney bast-rds that just won't listen.

AL.

 

[wright]

Lou, you called me into your thread. I wouldn't have responded to you at all if you hadn't. We had our discussions when we PM'd each other and I was going to leave it at that. If you don't want me to respond to your threads, don't call me out next time.

And once again for the record: I call it like I see it. If someone doesn't have symptoms and/or tests that indicate that they have ALS, I will voice my opinion to them. I will also offer alternative diseases and syndromes that mimick ALS to give them hope . . . and frankly . . . most of the time, that is what they have. ALS is rare . . . the alternative things I mention are much more common.

One other thing: I NEVER said you are fine. Obviously something has and is happening to you. I gave you my opinions and suggestions as to how you should handle it . . . I tried to help you when you asked me for help.

So what would you like me to say to you with the information you have given to me by the way. Let me remind you what it was:

You have had 3 EMG's . . . the first one showed signs of a myopathy and the next two were clean . . . and done by ALS specialists.

You have muscle atrophy without weakness.

Your twitching occurs a few minutes a day and has gotten better since it has all started.

Hmmmm, not one thing in all of that indicates ALS . . . NOT ONE! The ALS specialists you have seen, concur.

If you had as much muscle atrophy as you say you do . . . and it was due to ALS . . . you would not be able to move one of your limbs and you would be completely dependent for your care.

Captain Al (Mt. Pockets) was built like a bull before he got ALS: he weighed 275 pounds and had calves that measured nearly 20 inches. He lost 2.5 inches off of his calves and couldn't walk. You want to tell us that your thighs are completely wasted and you have lost about 30 to 40% of your muscle . . . and it's due to ALS . . . and yet you can still function? Give me a break.

Go on believing you have ALS if that's what you need to do . . . and sit and do nothing. That is obviously your choice. I still like you, Lou . . . and I sincerely hope you get to the bottom of what is happening to you.

 

[BethU]

If I could just post something where I wasnt immediately attacked by Wright . . . How can you say this without even physically seeing any of us?

Hi, Lou ... others have said this better than I can, but when you ask for information and an expert graciously takes the time to give you an educated reply, that's not called an "attack." It's called "an answer to your question."

If you don't want responses from people who have not physically examined you, then you should not be posting questions on the Internet. 99% of the people on this forum have no medical background. Fortunately, we do have a few experts (such as Wright) who help us out, but an online forum is not the place to get a diagnosis.

You need to see a doctor ... in person ... for that.

BethU