MND Diagnosis: My Concerns

[reneecatx]

I've been using these boards for a while, basically, i decided i had this condition - it was much better than any other alternative.

I've just been to see my doc's - and the ENT [long story] has sent him a letter; he thinks i have MND [als] (this is after me telling my doc (not my regular one) what MND was) - seing the document - MND was underlined.

I still dont think i have it - and i've had a clear MRI - doesnt ALS show up on that? I know i should probably do the reaserch myself - but i dont want to scare myself anymore.

Plus, arent i to young? 16 going on 17-years-old - isnt that to young?

Dont worry - im still being optomistic - i'll wait for the neurologists opinion [which i might have to wait upto 17 weeks for.....] - whenever i get anything wrong with me, i dont automatically assume its the same thing, and offen hope "it goes away."

Thanks.

[also, im not saying theres any kind of link between BFS and ALS, i do have other symptoms, ect, + my ENT checked my tongue and said i have fine fasculations ect........ I just dont want to worry other people on this board.........anywway, as far as im concerned, it'll probably turn out to be nothing]

 

[JennFiction]

M Blaze~

Maybe the doc was asking you what MND was because he wanted to see what your definition of it was. He probably knew you had been diagnosing yourself from the interent. I do the internet diagnosis myself and so do alot of people here.

MND, my guess, was underlined because that's what he figured you were focused on, not because he thought you had it.

I do feel bad for you, being 16 years old and thinking these "bad" thoughts. I wish I could wave a magic wand and make it all disappear for you Please don't worry...PLEASE. You don't have ALS. You have anxiety like most of us here, and your mind is playing games with you.

You go back to your regular doc, and talk with him/her about your concerns. About tongue fascic's...some people have them here!! It's still another BFS symptom showing itself... that's all.

I'm giving you a virtual hug (((M_Blaze))) and praying you can get over this fear, and get on with your normal teenage life.

It won't probably turn out to be nothing...it will be NOTHING..BFS=NOTHING

Renee

 

[skyfire]

What a dumb ENT you have. Almost everyone's tounge trembles to some extent...it is not an indicator that you have ALS or MND. You are too young to have ALS....it would be an anomoly if you did. Go and see your neuro, who after he does a neuro. exam on you can pretty much rule out ALS without even doing an EMG (An MRI isn't used to diagnose ALS, however.)

If twitches are your main complaint, I am pretty sure they will go away without treatment, much like you suspect. They are frustrating, but without the presence of weakness, you can pretty much rest assured that they are completely benign.

Hang in there....
Jen

 

[MyUsrName94]

thank you for the kind thoughts )

Truely, my stand-in doc did not know what MND was [it took him 10 mins to realise that we wanted to see a letter from the hospital, 10 mins for him to find it......ect] - basically he read the letter aloud and said "sorry, i dont know what MND is." He didnt even judge my responce.

I try not to worry myself, ive already been through enough medical proceedures before the twitching started [i've been on so many drugs, had so many tests.....unfortuanatly these tests did show stuff] - but when it comes to my future health, im an optimist ) - [when it comes to the National Health service im a cynic.... ]

thanks again, M Blaze