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Re: Possible als opinions please?

I found your posting to very rude also to tr knowing how this disease hits you and how hard it is to do a simple task. These people are wonderful people to be here for support and advice. If your going to be rude and inconsiderate you shouldn't be on here. You should thank them every time they comment on anything. And not to mention i am 21 years old and text all day, and couldnt understand a thing you were saying.And my blessings are with you hoping you don't have this disease.
 
New info on me please opionions? Sorry just need info not trying to self diagnosed..

Ok i have made several postings lately on this site since haveing my mri w and wo contrase 2x past 2 yrs and it was clear both time, just had lumbar puncture/spinal tap.. Now this was noraml just found out! And the mri of thoritc and spine had no leisons or plaqa consistant with ms nor any back or disc injuries!... But still i have the weakness, in legs when doing things such an odd feeling statrd in feb where i had symtoms of twitching all over body for a while, knees a lot twitching is from face to bottom on toes! )weird?) and its gotton progressivly worst since lst yr when it startd which i blew off along w the hand numbness which i blew off they are numb (alseep) every morning or differnt positions, and ive gotton testd for carpel tunnels, also now when i bend down or do say a squat or light yoga iam sooo shakey my legs and i have balance issues, which have seemd to gotton worst which i never paid attention till now, i walk and all unassisted but still iam weak in feb when all this strtd my left arm was twiching very badly and i got sooo weak during this time and felt as i was out of it went to 4 ers had all these testing noone could find anything suggestd ms.. Which i dont have .. And i got better somewhat withn 3-4 wks but still had some weakness.. Went on and off now iam on again when i walk it feels so heavy and the md said yesterday i had reflexes that indicatd throid bc they are overly well? Throyid and all sugars and vitamins levels are fine... So not that.. So here iam scared to death.. Which it could possibly be.. I just never thought it could have been anything worst then ms have not had any nerver testings done... When i was doing lp they hit a never in my back and my right knee startd twitching just like it normally does, when iam realxed this seems to get worst the twitching any ways.. Please any insight would be most helpful... I don have dr appintmnt untill june 20th! ?/
 
Re: New info on me please opionions? Sorry just need info not trying to self diagnosed..

You have posted several posts in the last 24 hours. Some people have tried to help, one person asked you to write precise questions so that he can attempt to answer them, he is the person you were rude to. He is the most helpful person on the forum who spends hours helping person understand their symptoms and getting acperspective on what's going on. I have difficulty understanding what you are saying and what you want, so I can't help either.

Just see your doctor and be patient for the answers. From your constant jumbled posts, I doubt that you are a patient person.

I also see you are hijacking other threads as well. That's not always a good idea
 
Re: Possible als opinions please?

HELLO
and i thank you so very much for your comment and iam so very very very very sorry for your diagnosis you have no idea.. it hits home in ways, o guess i could say..tho i have no ALS diagnosis as of yet and still in the ALS diagnosis process, also i dont inderstand what so ever what people mean w my attitude or any of that matter i askd a simple question and i didnt get a responce instead i got a rude paragraph back of my spelling ect etc and i see too many times on sites that are supposed to be helpful and insightful to others not put someone down in ANY WAY.. ans i guess i see it soo much i get upset and i guess my "txting" type paragraph was obvisly offensive to everyone on here which hoesnty shocks me it was not intentoal i type fast and its what iam used to.. i dont see what people didnt inderstand but thats ok?... ,but your were sweet and i do also understand people are going thru there own personal hell on here and i do mean personal hell on this earth and its horrid iam also going thru a lot tho i cant even say iam going thru my own personal hell i guess id say that before i knew what things were really about in life.. and you... wow. 24 iam 25.. i must ask if you dont mind.. what were your inital symtoms and how did they ALS diagnosis you what testing/? what did they say ur prognisis is for such a young lady.../?.. ive reasearch this some and it seems that this is rather comon tho ive never heard of it untill this and now...i was looking at something online a photo of ALS and MND w images which sorta lookd like mine.. but i have no idea and i wont begin too thorw out how i feel on this site.. and iam not in pain nor do i have senitvite skin or sensitive from heat dr said i had very strong reflexes which sometime indicated throid.. but i have had that and everything else testd to me normal.. so if you dont mind please some insight/ info?..thanks :)


Let me see if I can explain this to you.


I'm 50--I taught high school and have a daughter a bit older than you are.

Personally, I have a very difficult time reading posts that are giant blocks of text. Some here with ALS might have similar difficulties as they may be using an iPad to read and respond. They have pretty small screens. it's easier to read posts that have actual paragraphs.

Lose the texting speech--use real words. it makes it easier for us to try to help you. ALS usually strikes those over 40--many 50-60. You're not dealing with a population of people that understand text speak. You're 25--I'm assuming, capable of posting in complete sentences. I type 75 wpm (or did before I lost most of the use of my hands) and I can still type in complete sentences--make the effort if you want those here with the ALS knowledge to HELP YOU.

There are PALS here that can't. They have a difficult time typing ten words--let alone ten sentences. Keep in mind that if you want help from the people here with ALS that CAN actually help answer questions--you need to remember to make it as easy as possible for them to actually read and respond.

Angering the folks here by using short-cuts, sniping at them, telling them to take 'chill pills' is no way to make friends around here.

Many of the PALS here won't come to this section at all for similar reasons. They are tired of the BS. The don't want to expend their limited energy on those that can't take the time to listen to what they've been told.

Now, to your issues.

1. You have no clinical weakness--clinical weakness is determined by a doctor. That's a good sign.

2. You have clear spinal tap, etc. Showing no MS at this point--that can and often does change with time--especially in the young. See an MS specialist--or wait and see what happens down the road. One type of MS is called relapsing and remitting--because the symptoms come and go.

3. To diagnose ALS--they would start with EMG/NCV--but only after something in a clinical exam points toward something neuromuscular.

4. Tingling in your hands is a good sign--if it's not carpal tunnel--you can have trapped nerves elsewhere--even in your shoulders--that can affect your hands. AM numbness and tingling is very common in things like carpal tunnel.

5. I had too much trouble reading your post--I literally don't have the eyesight to read big block of text. If you've had an EMG/NCV and they are negative--you don't have ALS. Period.

6. ALS is only diagnosed when every other possibility is ruled out.

7. A lot of things can cause weakness--shakiness. Your GP is the place to start. Not ER. Er is meant for acute illness/injury. They won't take the time to do a full work-up, as it's not their job.

8. Everyone twitches--so ignore twitching. I think you were saying your reflexes were brisk--see if they can pin that down.

9 Research fibromyalgia- it's not that uncommon in people your age as you might think. ALS would be very uncommon in someone your age. VERY uncommon.

10. A prognosis is something individual. It progresses at different speeds in different people--some have lived years with this--and they're on this forum to say so--others have passed away all too quickly.

I'd suggest you spend some time reading some of this forum--especially the top two sticky posts. There is a lot of good info there.

Have a good day and hopefully find some answers--it really doesn't sound like ALS to me--let your doctor diagnose you. You'll scare yourself silly if you research on Dr. g o o g l e. And--much of the info you find is very generalized.
 
Re: New info on me please opionions? Sorry just need info not trying to self diagnosed..

and again i mean no harm and its been very very hard for me since the (weakness) has gotton the very best of me.. yes iam an unpatient person and iam doing condiderably well considering my circumstances amd all and iam not hijacking other postings that it may seem this way ... its been pure hell trying to get and of my dorctors to even do testing for me as iam weakr and weaker i do apologize for jumbled postings as there isnt much else i can do or if i have came across being rude too .. i have been reading other postings and when i see a posting of someone who is NOT diagnosed or who IS and has the same questions i do reply or ask a questions that concern me maybe help us both out..i would have never even came bck to this site w more postings if i had not found out about my neg LP.. and i will hopefully still comment on things.. as my questions maybe iam not saything them right thats why i posted a cple times or 3x to maybe reword what iam trying to say.. again i mean no harm and feeel for each and every person on here and rather i have this patriculr thing or not iam glad i know what others go thru so i can help in any way i can with awarness and prayers!.. many people are very unaware of MND or any sort i know i sure was.. i blew off many symtoms that stard a yr ago (maybe 2).. i never knew.... the weakness is what gets me... other stuff is just a annoynes worisome for me. but thanks a lot i do hope you understand me and i mean no harm God knows this i live for him and if i was the person people tend to say iam.. that would not be good for me....this is MY WAY of dealing w things i will only make posting on this forum .. do i have als?.. i will read other postings in the general but that all.. love and peaze to each and everyone on here :).. truely.. i just want opions,,, suggestions,.. other storeis,,agian is MY WAY of dealing:).. thanks so much:)
 
Re: New info on me please opionions? Sorry just need info not trying to self diagnosed..

And again--you're not listening to our simple requests.

Use full understandable sentences. (We don't care if you can't spell--but spell-check does great on Firefox) BREAK UP THE paragraphs for the reasons mentioned in your first post. It's EASIER TO READ THEM.

Seriously--if you want help--ask specific questions and we can try to answer them. You don't want to burn bridges on this forum with the people that can help you the most.

I'd also suggest you keep the same symptoms in the same thread--it's easier for us to keep up with anything new. i post a lot--and have had people comment that I post too much--but 16 posts in one day is a bit much.

You don't know enough about ALS to give good advice to the others that are wondering. Mis-information is just as bad as no information. Just a heads up (No, I'm not saying you've given bad advice--to be honest, I have a really heard time reading anything you post)

Your age is on your side-its unlikely you have ALS--and with weakness this long, you'd have most likely developed clinical weakness noticed by a doctor upon exam.

Please--spend some time READING the two sticky posts. Read some of the answers we've given others with very similar symptoms and concerns.

If you truly don't mean offense--then please respect the requests of those that have taken the time to try and help you. Right now, it seems you're just content to keep posting and ignoring anything said by anyone.

When someone meant "hijacking" other threads--they mean that you should keep your questions about your symptoms in the thread you started. Pick one and use it.

In the meantime, if you want to learn about ALS--read some of the posts. As for MS--there aren't many here that can tell you much. It is possible to have nothing show up early in the disease--unusual--but possible.

I asked a few questions in one of my replies to your posts--don't think you answered them--which is fine. It is beginning to seem like you're simply not willing to make it easier to help you.
 
Re: Possible als opinions please?

Hi again @munecagirl22. I understand where you are coming from. Sometimes, unforuntately, we have people or computers hacking onto the site and a good indicator of this is a lot of misspellings and words slammed together like 'text speak'. So members, esp. ones that have been on the site longer are very careful to watch out for these and need to make sure they are 'escorted' off the site asap.
My diagnosis process began almost a yr and a half ago when I noticed that my balance...I have been a dancer for 21 years, was off. I could no longer even make one turn without severely having to overcorrect to stay on my feet...this was far from the norm so I checked it out right away. Unfortunately with young age, doctors have a harder time taking your symptoms 'seriously' and like to chalk up everything you have to anxiety, just wanting attention, or eating poorly. All of these things couldn't be farther from the truth with me but I still had to go through the song and dance of saying "really, I don't eat pizza, or hamburgers. I eat turkey sandwiches, salads, and drink ensure." Anyway, after I conviced the dr. that I wasn't leaving till he told me something else besides therapy, I got an MRI of brain and neck and was started on physical therapy. MRI's came back clear and was given a neuro test. That was the first red flag to neuro as I had many 'positive' or 'abnormal' tests. EMG was taken after that...came back abnormal. Then I was sent to ALS speciality clinic....clinic exam again abnormal, EMG, were not conclusive. Dr. said wait and see. Finally, got 3rd opinion and one more EMG to get a definite diagnosis of ALS. My symptoms progressed of course over the amount of time. Went from a balance issue, to trouble walking, twitches, fasciulations, problem with dexterity, extreme fatigue, swallowing problems, talking and singing problems along with problems breathing. It seems that my breathing is going quickly..more so before the limbs. O2 is on average in the low 80's. But it is different for everyone.
Just remember as well that the people who reply the most to posts, are "extremely helpful members' for a reason. You rise in status to this with the more you reply to posts by other people. Now I am not saying that these people wanted this status so they can raise their numbers, no , the point is that most of them try to do their best to give the best answer to the most amount of people in a quick manner. Early on when I was in the 'Do I have ALS' section I also felt unfairly treated, but realized later it was just the people and their personality in how they answered the question. You have to realize that people see one twitch in their body, go to google, and then als pops up and they freak out. We have to sometimes be curt in the answers to say hey, wake up and live your life! You don't have AlS...otherwise they will never get it. I hope all this info helped. Leave me a message if you have any more questions. Take care.
Kell
 
Re: Possible als opinions please?

I make very few posts to this forum because I'm still reeling from my Husband's diagnosis! But would you please do everybody a favor and learn how to spell and/or at least utilize some simple gramatics in your sentence structure. I realize that this is not a "spelling bee" or English 101, however, the fact that you can't even manage to complete one simple sentence in any form of intellectual capacity is scary! Invest in spell check or go back to school. I am offended by someone so intellectually challenged having the audacity to get on this website and expect anyone to give your query any type of serious reply. Scarier yet, you're 25 and might have actually graduated from some type of school! If you want ALS so darn back, figure out the osmosis process---you can have my husbands!
 
Re: New info on me please opionions? Sorry just need info not trying to self diagnosed..

hello
thank you for your reply when i put postings up i try to put in every little detail i can imgine of how iam feeling... and i havnt answerd anyone else postings on here just told them iam in ALS diagnosis process and have same symtoms.. as once either one of us get testing or findings sooner we could get back w them.. let them know,, bc ive been in and out of ers and a neuro and differnt drs and i also self pay... and i have also currently just quit my job bc of everything and it was a call center.. so simple work.. i also have been going back ofcourse of my postings before and have not seen any questions you had askd me.. and i also made differnt postings the new one i put today was differnt as before i had not recieved my LP back.. so now iam more worried needless to say.. and yes i do relieze you say age is on my side.. but what ive read.. seen,, etc etc diease and cancer just dont discriminate..:( i hope age is ON my side.. but w my symtoms and the way i do feel highly UNLIKELY i mean i could easily fall into that "rare catagory"
i just wantd some insight on people who are going thru this not drs who have no idea and all they seem to care about is.. well.. nothing.. $$ maybe?.but not helping and its TOO hard to keep shopping around and getting to dr appontments which end up being pointless needless to say waste of time and $$ when already dealiing w sick and scared.. i have YET to go to one dr who has truly listend or understood me... not ONE.. and yet i get worst.. weekly.. monthy... this weakness only startd back in FEB the twittching wasnt bad at all back in august as like it is now after i got reallly weak.. espically while relaxing....so yes this is why i come here .. i need somehwere to go and follow on i SURE as heck would not be on here if i was just paranoid or worried.. this isnt me..
so again thanks for the reply i do understand what you mean.. try to understand me also, which you do.. :).. thanks again....
also have read the sticky notes over and over aagain and unfortunly they dont seem to pretain to me i wish they did and they had the answers i need:)
 
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Re: New info on me please opionions? Sorry just need info not trying to self diagnosed..

"also have read the sticky notes over and over aagain and unfortunly they dont seem to pretain to me i wish they did and they had the answers i need"

Your symptoms don't sound like ALS. Wait and talk to your doctor June 20th. None of us here can diagnose you. Only a doctor can. If the sticky notes don't pertain to you then I'd say you don't have ALS.
 
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Re: New info on me please opionions? Sorry just need info not trying to self diagnosed..

OK folks, time to stop feeding the trolls. If she won't listen, don't answer. Do you have one iota of common sense? This is how you structure a post so it is readable.
You've been asked twice to not run your post together. Would you be paying attention at all?


AL.
 
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Well, hon, I've tried. I'm done trying

Edited--just saw AL's reply.
 
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Re: New info on me please opionions? Sorry just need info not trying to self diagnosed..

thanks for the reply:) and i thank everyone else AL and all for there replys:) sorry my sentences are ran together i also am trying ... but i cant help it sorry i do hope you all understand.. and AL maybe i dont have common sense and iam happy that you do... so maybe you can help us out here some who dont have much some are not so lucky:)

and i do apologize i ment to say the sticky notes they do pertain to me yes, but i have more SYMTOMS of als not stress, etc etc but the twitching (facilitons) and weakness and all combined it just makes no sense and yes iam going to the Neuro June 20th ,but so far i have not gotton any luck... and i came here just to talk w others w this horridness, and sorry i have came off so stupid and non common sense i came here just like the rest of you for some questions , support, or anything else, hence the name "support group" so thats all good i guess ill leave you all alone.. even if i do have this .. too bad support groups are usually fillded with awesome people.. not that any of you are not bc you are and to have something like this is i dont know or have words to say.... amazingly strong people.. i just wish i could explain more so you all would inderstand me:)

supportave NO matter how ... but thanks everyone for the INSIGHT they have given..... and again ill be praying for each and everyone of you.. every night.. God is and can be the ultimate heaLER.. he can stop ANYTHIING... love :) ashley:)
 
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Re: New info on me please opionions? Sorry just need info not trying to self diagnosed..

Now that's better Ashley. People were trying to help but you weren't listening. Wait until you see the doc and see what they say. Try to relax til then and let us know what they say. Don't try to get a diagnosis from the internet before then.

AL.
 
Re: New info on me please opionions? Sorry just need info not trying to self diagnosed..

Hi Ashley

Good thing you have an appointment coming up. The time will go faster than you think. Try to have an easily understood list of symptoms for your doctor. Read more information on here--I think you'll find that your weakness, while very real to you, is more what we call a 'feeling of being very weak' rather than actual muscle loss weakness.

"Jelly Legs" is a 'feeling of being weak' but can well not be clinically weak--as in a muscle just will not do what it should do--like lift your soda can or turn your car key. A lot of things can cause it.

No one here wishes you any harm--we hope they find a reason for your problems. One thing you'll notice if you read enough--your symptoms are very familiar to many of us. Stamina weak feeling (jelly legs) are actually a sign that point away from ALS.

It is natural to be anxious when our bodies are doing strange things we don't understand. Your neurologist at the very least will do a thorough neurological exam which will lead them to some answers for you.

Also--as many here seem to do--don't 'exercise' and 'test' your muscles. This actually can make your symptoms much worse. Do your daily activities and get the normal exercise that anyone your age would do.

ALS is -- honestly -- very unlikely. It does not mean you aren't having problems. Fibromyalgia, vitamin deficiencies, potassium levels being off, thyroid problems--see where I'm going? Lots of possibilities. Even just worrying can make everything you're feeling worse. ALS never 'comes and goes'---other things do. Myesthenia gravis, for example, makes your muscles weak with use and they are better with rest. Another symptom you have that points AWAY from ALS.

I do wish you well. Appreciate the breaks between paragraphs--wish you could lose the abbreviations, but at least I could read and understand that last post. I would ask about the white spots on your MRIs and see what they say they are, too. Good luck to you, Ashley.
 
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