Possible als or fibromyalgia opinions please?

[Guest]

Re: bulbar issues? more info on it please

HELLO AGAIN,
MAYBE I HAVE NOT I EXPLAINED MY SYMTOMS CLEARLY, BUT I HAVE BEEN TO OVER 4 DIFFERNT DRS AND 2 NEUROS AND THEY ALL LOOK AT ME LIKE IAM CRAZY AND NONE HAVE EXPERIENCE IN ANYTHING. AS IT LOOKS WHEN MY MRI CAME BACK CLEAR FOR MS HE STATED U DONT HAVE MS OR DEVICS.. IT WOULD SHOW ON THE MRI I EXPLAIND TO HIM THATS NOT TRUE THERE ARE SOME CASES.. HE SAID I WAS WRONG..

This is a quote from one of your other posts--

Get your story straight. You contradict yourself and it's not only confusing--it makes people wonder if you're really having any of the issues you're discussing.

You've apparently started with twitching--which you've been told over and over is not a sign of ALS when there is NO LOSS OF USE in any body part.

Slurring--I'd believe you didn't know what slurring was--if you were 10. Adults know what slurring is--and it doesn't come and go--it comes and stays.

You're quick to discount anything that is remotely fixable--or benign.

BFS--you've ruled that out.
Globus--you've ruled that out
MS--doctors have ruled that out

Before you waste the time and money on a new doctor, why don't you sit down and write down ALL your symptoms and send them to the doctor before your visit.

EVERYONE skips a word or has a word come out wrong once in a while. MANY people have the "lump in throat" feeling from time to time.

ALS isn't PAINFUL (except in UMN presentations) and one of your first complaints was back spasms. The other was twitching all over.

WE CAN NOT DIAGNOSE YOU. See a neuro and get some answers. (Neuro 2 or 3 or whichever)

Personally, I'm done answering these absurd posts.

 

[Guest]

Re: bulbar issues? more info on it please

For Gods sake Notme, stick to your guns. You're the worst one on here for feeding the trolls.

AL.

 

[Guest]

Re: bulbar issues? more info on it please

he gave me i think its a zpack... he said they were something i for got... i was sorta loopy lol waoting till 6am... but they seemd to help some not sure what steriod myopathy is.. at this point iam not looking up anything else on google concerning symtems thats a no no

i have learnd on this site.. and of good reason i must say

 

[Guest]

Re: bulbar issues? more info on it please

notme yes thats fine thanks for the time, but those back spasms and twitching startd back in dec and jan 10 and i ignored all of that. The weakness was what sent me to the dr in the 1st place and they said it could probably be ms.

then they askd if i had twitching and spasms and other stuff those 2 things actually came 2 months before any weakness, so iam assuming this is great for me , thanks though.

 

[Guest]

Re: bulbar issues? more info on it please

For Gods sake Notme, stick to your guns. You're the worst one on here for feeding the trolls.

AL.

My reply to this thread (the ONLY one I made) was intended more toward the NEXT person that read the thread and was tempted to answer--and after multiple PMs to me from her.

If you have a problem with my posts--feel free to delete them, but I'll darn well defend my reasons for posting them publicly when I'm accused of feeding trolls like this.

An old member here told me a while back that very often replies are intended as much for the NEXT poster to post in this section as to the original poster. It made a lot of sense.

If you look back at my posts over the last month or so--I am rarely coddling to any of the obsessive ones that post over and over and with new symptoms and names--other than to point out WHAT they are doing.

 

[Guest]

Re: bulbar issues? more info on it please

I have bulbar onset als diagnosed in october 2009. It started with slurred speech. Then i had trouble moving food around in my mouth to get it to a position where i could swallow it comfortably. I realized my tongue was becoming paralyzed. If i swallowed the wrong way, i would gag. I know some others with bulbar and they have slightly different problems. I guess it depends on which muscles are involved. Good luck to you.

Chris

 

[Guest]

Re: bulbar issues? more info on it please

Chris, my bulbar onset was identical to yours and is almost always the progression path.

 

[Guest]

Re: bulbar issues? more info on it please

ok thank you that's a good explation,

i was thinking that it was having problems once you swallow foods and then they get stuck and you keep drinking and drinking and its still there, but sometimes it isnt there, i never had issues swolling pills and the pill i took this morning and food i eat gets stuck in my throat what a terrible feeling... maybe these antiboatics and steriods will help bc they have helps with the sore ness in my throat

 

[Guest]

still unALS diagnosis, just had ncv&emg

hello
just thought i would update my post for if anyone ever reads mine, and has simlar stories, how things continue and turn out.

i still have all of my symtoms, the brief reflexs, balance issues, tremour with weakness, espically when doing things (pressin cell buttons, holding things, books drinks, bending down, just plain walking fluttery shakey legs etc etc). They have never gotton better within the 6months i have now had them The facilations are bodywise from nostril to toe, including charlie horses.

I still have my strength tho and i have no paralisys and its been 6months (feb11 dec10 twich and spasams startd).

The tech did my ncv and emg which was very quick not painful, didnt even stick needle in to far did for arms and legs, he found 3 facilations, and said that he sees ALS very frequently in the 20yrs he has beeing doing these test he said he is not a neuro but mine looks good. Follow up is needed ofcourse which isnt untill the 29th.

I askd him a few questions he was very helpful, he told me differnt things about ALS. since he has seen it quite often and explaind how the EMG detects ALS, he told me that sometimes that the EMGS miss ALS, that it is possible ,but once people start noticing issues, then the EMG usually picks it up, he also told me in ALS the twitching is 24/7 continuous and all over the body (like mine?, but mine stops).. and he said ALS usually hits men, as its a man dominant diease and usually hits in the 50-60's

He told me i had one of the best neuros in the state DR. Kooistra and she is frank and honest no matter what it is so iam hoping for the best, he made me feel great that i dont have it, but ofcourse things do stil concern me all my issues i have no clue why are not geting better and why after panels and panels of blood work and a normal NCV where my issues are coming from?...

i was certain id have a abnormal NCV w all the tingly/numbnss in the morning like trapped nerves... only thing so far was high ammonia levels, which i am sure its from all the advil ive taken in my life, for headaches and thinking they help back spasmas, so what wrong? STILL no clue.. but i can not dwell on it for now "knowing" i have ALS.. the odds are on my side..

no matter the outcome :\... i do believe that ALS needs tons and tons of awareness.. and that is THE LEAST i can help with.. thanks to all the replys i have gotton from many on here..and i will post my updates as i get them,,prayers please