need help!

[keegansmommy4]

I'm still just so worried about everything tht is gng on. I have had just about every test except for a lumbar puncture and am still waiting for some results, but. I feel tht its getting to the point where its inevitable because I knw als is a disease of exclusion. Does anyone knw about ppl testing positive for ANA antibodies but still gng on to have als? I am also scared about the scar tissue tht they found on mu brain because I knw thts wht sclerosis stands for but it was supposedly just on the deras when they did my surgery. I have had 5 emgs all normal with the last one being a month ago but the symptoms have gotten worse in tht time and the tremendous weight loss really scares me too. What do u guys think? I woul greatly appreciate any input or advice. Thanks again
Emma

 

[GlenBrittle]

Hi Emma,

OK . Sit back and take a deep breath. You are winding yourself up too much, at which every little symptom becomes much more pronounced.

Think positive. You have not been diagnosed with ALS have you.

Help the doctors , relax , and them do their jobs. Look at it this way. Put a penny in a glass of water and stir up the water . While the water is upset , you cant read the writing on the penny. When the water settles down its easier to read. Think about what the neuros need to see when you visit. You need to be calm.

I know it sucks when you dont know , I was like that for a year.

Glen

 

[lydia]

Emma,

I understand your anxiety about the ALS diagnosed being "one of exclusion". I had read enough here and elsewhere to understand that the clean MRI, bloodtests, and whatever else were not necessarily good news if you were imagining that those tests were knocking everything else off the list of possibilities leaving only ALS. So being told this or that were normal (or not causing your symptoms) over and over again only increases your anxiety, because what else could it be? if not ALS? I remember confiding in a friend that my MRI had come back normal (sort of, long story). And she replied something to the effect of, "that is great news" but inside I was thinking, "OMG if the MRI is clean, then what is left? what is left?!" ALS fears consumed me (thankfully only for a few days as I had an EMG right away). But I have learned, as many other undiagnosed here have learned, that just because you knock off everything you can think of from the possible diagnosis list does not mean that ALS is the only option left. Just maybe ALS should not even be on the list (because of your symptoms) or maybe ALS has been knocked off (like from a clean EMG). In my case, it seems like every reasonable possibility has been eliminated, and still no ALS. You never know, you might just be in it for the long haul and it may be quite a while before you know what is behind your symptoms.

Lydia

Reading my above comments over I realize it is all garbled, but hopefully you understood. Too tired to improve.