I still think I have ALS

[boxer22]

Hello everyone, dont know if you remember me or not but i havent been on or posted in a while. Went to the als clinc and had another emg it was fine, i doesnt matter because i know i have als. I am 99% sure. When i started twiching almost 2 years ago i was worried that it might be als but then everyone keep saying twiching with no weakness is good so i thought their was a chance that maybe i didnt have it. Well nearly 2 years since i started twiching i can barley lift my arms above my head! My shoulders are wasting away so much so that none of my shirts will stay up on them. I can barley left my 2 year old son. I cant blow dry my hair without stoping and taking frequent breaks in between. I can type fine still because their is no lifting involved with my arms at all. So i am asumming its my shoulders that are the biggest problem right now. When i went to the als clinc about 5 months or so ago my exam was ok and he wasnt that concered even though my reflexes were very brisk and my tonue was twiching and my arms were weak. The weakness seems to have got a whole lot worst now. like i said i can barly lift anything high, if i try my arms start shaking very bad. I know i have ALS, i am not freaking out about it but i know i have it. My als doctor wants to see me back next month, i will go but no matter what he says i cant think of another reason why i am losing so much strenth and why my shirts wont stay on my shoulders. I am trying to accept it as best i know how. Thank you guys for all the suport. This board is amazing.

Ashley

 

[Blizna]

What you describe..its most likely not ALS (due to such slow progression and also twitching 2 years before weakness) but probably could be serious neuropathy or myastenia gravis?
Again, I have read the study - there was only one reported case when patient had twitching 1 year before weaknes - and that was so rare that the study was published!

(Cramps, muscle pain, and fasciculations Not always benign,Mamede de Carvalho, MD and Michael Swash, MD)

So you can see how rare it was...so almost no chance to have it after 2 years..
You should be concerned on things you likely have, like that myastenia or kinds of neuropathies..

 

[wright]

I am so SICK and TIRED of people coming here and announcing they have ALS when they haven't been diagnosed. It does NOTHING but scare people and for no reason at all. It is also VERY disrespectful to those who actually have the disease.

You have absolutely no idea (OBVIOUSLY) how many other diseases and syndromes can cause your symptoms . . . or maybe you do but you (for whatever reason) choose not to entertain those differential diagnoses.

For those of you who want ALS, so be it . . . but leave those that don't want the disease to keep calm until they are evaluated by someone competent . . . not by google.

I could go on and on about this (as I have in the past) but I choose not to WASTE my time (although I guess I just did) because it obviously goes on deaf ears.

 

[crystalkk]

Ashley,

Have you ever had your PTH tested? Parathyroid disease is one of the things that mimic ALS.
Please google (Hyperparathyroid brisk reflexes) you will not believe what the symtoms are:

brisk reflexes of course
twiching even in the tongue
weakness
atrophy of proximal muscles (closest to the body)
and the list goes on

Please look into this before you self diagnosed yourself

 

[CB1977]

Ashley- Dont give up hope. Until the Doctor at the ALS clinic actually says "You have ALS" then there is hope that it is something else. I cant imagine that the Dr's at the ALS clinic wont be able to at least give you something to go on during your next visit given the significance of your symptoms. I think you will get some feedback then and hopefully it will be something that is manageable or able to be totally cured.



CB in Ohio

 

[boxer22]

and Michael Swash, MD)

So you can see how rare it was...so almost no chance to have it after 2 years..
You should be concerned on things you likely have, like that myastenia or kinds of neuropathies..[/QUOTE]


Bliza I understand what you are saying really i do. Yes my twiches started around 2 years ago and yes now i can barly left my arms. I am not sure that i didnt have weakness when i first got the twiches. I paid so much attention to the twiches that i could have missed myself slowley getting weaker, who knows. All i know now is that i do notice it and so does everyone around me. I am not imaging my clothes falling off my shoulder because my mucsles are disappearing there. I have looked into the fact that i could have another problem instead of als. The reason i keep coming back to als is because all of my worsining sympotms match this one to a t. And wright i am not try to be disrespectful just stating how i feel. I am sorry if you took that as disrespect. I have seen a good doctor, dr bedlack at duke unversity als clinc. Although when i last seen him about 5 months ago he didnt think it was als he still wants to follow me in case. Tongue twiches, twiches everywhere else, arms are so weak, (legs are weak to but not as much as the arms), wasting in areas, brisk reflexes, and bad cramps. Really why would i not think of als.

 

[boxer22]

Ashley- Dont give up hope. Until the Doctor at the ALS clinic actually says "You have ALS" then there is hope that it is something else. I cant imagine that the Dr's at the ALS clinic wont be able to at least give you something to go on during your next visit given the significance of your symptoms. I think you will get some feedback then and hopefully it will be something that is manageable or able to be totally cured.



CB in Ohio

Thank you, and i will keep that in mind. I go back next month.

Ashley

 

[wright]

What else can it be? Let your neuro figure that out and stop tormenting yourself in the meantime. You don't know you have ALS so please do your best to calm-down until your next appointment.

 

[Hyppo]

Wright, I can truly sypathize with your reaction. And also feel abit ashamed, becaues I'm one of the people coming here with symptoms, worrying about als and not having a diagnosis of any kind and haven't even had a neuro exam.

And maybe naming the thread "I have als" is provocative, if you don't know this for sure, but we're all scared here, and we're all reacting in different ways. The important thing is perhaps what people are concerned about and not how they actually choose to express it.

But you actually do have a cathegory here called "Is this als? Do I have als?" and maybe if you don't want the worriers (which I could totally understand) you should remove that cathegory.

I guess there are different degrees of worriers. You have the twitchers, who are concerned about their twitching and 99999 times out of 100000 don't have anything to worry about. But then at the other end of the spectrum you have people who have gone through multiple neuro exams and have plenty of symptoms and haven't had one plausible explaination as to what their problem could be. So they come here.

No one wishes for an als diagnosed. But the logic of "I don't meet the clinical criteria of an als diagnosed, so I don't have it" doesn't comfort everyone, especially if you have symptoms that keep progressing.

I hope coming here with worries is not the same as being disrespectful. Even if I hope I don't have als (which I'm not ashamed to hope I don't) I sure know a whole lot more about the disease now. By keeping this community open I think you are doing a lot for the awareness. In the long run you're doing a hell of a job.

 

[Spacemonkehh]

Wright, I can truly sypathize with your reaction. And also feel abit ashamed, becaues I'm one of the people coming here with symptoms, worrying about als and not having a diagnosis of any kind and haven't even had a neuro exam.

And maybe naming the thread "I have als" is provocative, if you don't know this for sure, but we're all scared here, and we're all reacting in different ways. The important thing is perhaps what people are concerned about and not how they actually choose to express it.

But you actually do have a cathegory here called "Is this als? Do I have als?" and maybe if you don't want the worriers (which I could totally understand) you should remove that cathegory.

I guess there are different degrees of worriers. You have the twitchers, who are concerned about their twitching and 99999 times out of 100000 don't have anything to worry about. But then at the other end of the spectrum you have people who have gone through multiple neuro exams and have plenty of symptoms and haven't had one plausible explaination as to what their problem could be. So they come here.

No one wishes for an als diagnosed. But the logic of "I don't meet the clinical criteria of an als diagnosed, so I don't have it" doesn't comfort everyone, especially if you have symptoms that keep progressing.

I hope coming here with worries is not the same as being disrespectful. Even if I hope I don't have als (which I'm not ashamed to hope I don't) I sure know a whole lot more about the disease now. By keeping this community open I think you are doing a lot for the awareness. In the long run you're doing a hell of a job.

Same here! i have had a MRI scan and some bloodtests to rule out lyme disease; both clean. My neurologists says he doesnt have a clue what the cause for my twitching, perceptional cramps and paraethesia is, but its most likely benign and will dissapear sometime in the future. I told him how fustrated the conclusion of his report was; no lable.. so i dont know what i have. I putted the BFS lable on it myself.. but its nothing official and it makes me feel angry and unrelieved at the same time

 

[boxer22]

What else can it be? Let your neuro figure that out and stop tormenting yourself in the meantime. You don't know you have ALS so please do your best to calm-down until your next appointment.

I will try my hardest not to think the worst. It just really hurts seeing myself to the point i cant use my arms like i use to, and cant wear my normal shirts now. I am only 25 and i have as much strengh in my arms as my 6 year old son. Heck, he has more. I do know something is wrong but maybe there is a chance i am wrong about als, i hope so, but feel very concered about the possibilty of als.

Ashley

 

[wright]

No one here is suggesting people shouldn't voice their concerns about their symptoms. I am all for that and that is one of the reasons I have remained on this site: to help those that are scared.

What I take exception to, is when people announce they have ALS without being diagnosed. That is just plain wrong, whether they're scared of having it or not. Tell us your symptoms, your progression, your tests, etc. and we will try to help you . . . BUT DON'T tell us you have ALS unless you are diagnosed.

One last thing:

Hyppo, your words made it sound as if you think I run this forum. I do not. The person that graciously started this forum is David . . . Al and Cindy are the moderators. I am simply a member just like yourself. They deserve the credit for keeping this forum open and for making it the best damn forum on the internet.

 

[jennibf]

What you are going through does sound very scary and so many of us (me included) come here after doing a search and finding out that one or more symptoms can be ALS so you are certainly not alone in doing some self diagnosis but stop and wait. If I ever (God forbid!) get that diagnosis, I am going to get a second and maybe a third opinion just based on the research that I have done. They are going to have to prove to me that it is ALS (as someone on here posted once).

 

[L4dybugg]

I don't think most people on here are getting it. Wright does care about each and everyone of us. He is trying to give us some hope. Some good sound advice, but it seems it's the advice that most people don't want to hear. The point is, you need to trust what your doctors are saying. And not to give up, and have some hope.

Wright does not have to be here, but he chose to stay, to give his time, to help us all. But most will not listen to what he has to say.

He is 'not' saying anyone of you do not have something wrong. It is clear that you do. (something). There are lots and lots of illness out there. Trust me, until your doctor tells you "you DO have this or that", and when you 'do' get the news, it is something you 'don't want'.
so please be thankful for the abilites that you do have.

Please know I'm not trying to be mean, I care for all of you on here. And I agree saying you 'do' have als when you don't know, is not right.

 

[Zaphoon]

Try This! It Really Works!

I agree! If the experts can't call it, I sure won't!

Hey, just think, until proven otherwise, its just a "pinched nerve". Why think anything else? If someone asks, "Why can't you do this or that?" You just answer, "I don't know but its probably just a pinched nerve."

There! No more anxiety over whether or not you have ALS. You've reduced your problem down to a pinched nerve until your doctors can PROVE to you otherwise.

Please tell me its not too hard to think like this. My "pinched nerve" gives me trouble but the neuro is looking for it and in time, he'll find it, fix it and I'll forget it.

Zaphoon