Kathylund

Really not sure, it was a scrambled mess, she said dr C will see you this coming Tue, the 18th so I am not really sure, hoping they call in the morn, but the message says they don't return calls on tue morn because they are in clinic. How did your dinner go?

Soo sorry about your son's friend. That is soo sad horrible do they know who did it?

did you hear anything?

Kathy, my neuro ordered the modified barrium swallow but I think (not positive) the a PCP could order it also. my neuro would not do an EMG so i think the EMG is probably more telling than a swallow. there is a difference between a barrium swallow and a modified barrium swallow. i think you would want the modified barrium swallow (but i am no expert). please try and listen to what the drs say. the testing isn't going to do you any good if you already have your mind made up that it is def ALS. try not to focus on ALS, try to focus on finding a solution. have you seen an ENT? you would be amazed at how much sinuses can effect the way you feel. just a thought ...

Thanks however now I can't sleep. I'll text you number tom.

Hi.. I will call you. I did email Dr. Cudkowicz about you. I'll let you know when I hear a response. Thanks for your prayers!!

I do not mind questions at all. My neuro never said "don't worry you don't have ALS". That is what I wanted him to say. What he did say is "no one can tell anyone 100% that they do not have ALS but I am very confident that you do not have ALS". Then I went to a neuro muscular specialist since my regular neuro would not do an EMG and got an EMG. The EMG was clean and I was still skepticle and then after much wasted time I began to realize that the people here and the Drs. were right. It's not ALS. The speech therapist is present during the modified barrium swallow, along with the radiologist so yes I did see a speech person. She told me that in all of the ALS patients that she has seen it is VERY obvious that there is a serious problem. I still worry about my brain, but I realized thats it is not ALS, at least not now. I think if you had ALS a DR would be suspicious of that by now and tell you.

Have you gone to the speech therapist? If so have they detected anything in your speech? Has the neuro told you as they have me, don't worry you don't have it? I am still so worried and really getting me in a depression, sorry for all the questions and thanks

I still have the problem. I actually don't notice the lispy as much anymore as I do biting my tongue. That has never gone away. I just follow up with neuro every 6 months and pray. Those are really the only two things that I do. I have had tests. I really just pray it will go away and try and do anything I can not to think about it. I wish I had a better answer but there is none. The speech therapist and the radiologist do the modified barrium swallow.

Sorry if I have made you think that I thought it was in your mind. Either way ALS or not though the more you think about it the worse it could get. Modified Barrium Swallow test is what you would want. I have symptoms, real ones but I wasted alot of time on ALS when the Drs were saying No. Just thought I could help spare you the same thing.

hey if your up call me to talk

the modified barrium swallow is the test that eased my mind the most. maybe that will help??

welll i do understand this i completly do but they got mad at me from my very 1st post and i di respect them i have been reading ur post too you dont sound like you have it either not at all. i know firsthand personal experience drs cant have all the answers bc sometimes those answers are jus not there yet in a clinical test or diagnostic test. just not just like emgs only show up neg when 50% of that nevre is gone in area tested not 10-or25% but a whole whopping 50%... have you ever visited the alstdi site and fourms read over some peoples stories.. one guy rlshauffer and another he had als for 4yrs test all come back ok went to 4 neuros and 2 als clininc mayo finally told him and just now yrs laters his emg came up clean.. thats where i get my info from... but heck maybe i dont but i sure have the same symtoms of als patients rather its als or not

just want to know many others do not like me on here as if you cant tell by my threads or post ,but i have read yours and i cant say i have the same symtoms but can say i know EXACTLY how you are feeling about maybe haveing als and being in utter limboland its horrrriiibbblllee.. and iam the troll.. lol.. but iam so sorry i dont wish this feeling on anyone. and i myself cant kick it i dont have this diease its not been long enogh i dont think for me and my symtoms uhh...feel free too message me

I just told him off. He makes me sick!!