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.
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"
