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.
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..
THEN I GOT KLOMPIANS WHICH HAVE ZERO EFFECT ON ME ,BUT I THUGHT I WOULD GIVE ANYTHING A TRY..
I WISHHHHHH THIS WOULD HAVE WORKD OH SO BADLY, BUT IAM STILL IN THE SAME POSITION AND FEELING.
NO I DONT KNOW WHATS GOING ON ,BUT I DO KNOW ITS SOMETHING AND ITS SOMETHING NOT LITTLE WE KNOW OUR BODIES, WE JUST KNOW AS ALL OF YOU ARE AWARE,
MY SYMTOMS ARE THE TWICHING ALLLL OVER FROM TIPPY TOE TO EYEBROW, THIS MORNING I WOKE UP W 2 NEW TWITCHS MY NECK AND RIGHT LEG WERE GOING AT IT.. MY FACE THIS WEEK HAS ALSO STARTD MY NOSE ETC ETC WAS NOT LIKE THIS BEFORE MY TWITCHING STARTD 4 MONTHS AGO..
MY MAIN CONCERN IS MY LEGS, THE FEELING I HAVE IN THEM THEY ARE SOO SHAKEY WHEN I DO THINGS OR EVEN WALK ALMOST LIKE CONSTANT VIBRATIONS, WHEN I GO TO READ A BOOK MY HANDS DONT WANT TO HOLD IT THEY SHAKE AND TREMOUR, AND WHEN I BEND TO PICK SOMETHING UP . THIS WAS tiiiny BIT BETTER FOR TWO DAYS ,BUT FULL SPEED TODAY
AS MY SPINAL TAP MRI BRAIN (2) and mri of thoric and spiine allll came back ok, and the dr didnt want to do them in the 1st place i have askd him for a refferal to a new neuro.. no luck,, and i askd my fam dr but HE wants to retest everything he has alredy and put me on more anxiety meds,,, this is just becoming impossible, and iam just seeming to get worst (espically the twitching)
thanks for listening and any inputs once again
