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  • If I were you I would give Mayo Clinic a shot on finding out what is going on with you. My dad took my mom there when she was diagnosed with colon cancer. They were pretty blunt and told my parents there was nothing out there that would help her. It was hard words to hear but they were absolutely right. I am so sorry for your frustration. You are in my prayers, Kim
    Hello just saw that you may be in the Tulsa area, please contact me about our wonderful support group. Talk with Barbara G at the clinic and tell her TJ invited you to the meeting. It helps so much and has great people involved. Also find the group on Facebook at Tulsa Area ALS Support Group.
    hi kate
    when i first saw dr beson last september, i told him i just wanted to now what it was. not knowing makes the imagination run wild. you will see a full array on the team. mary an rn will likely do your vitals. wendy beson rn does alot of education. pam or debbie do the respiratory tests. teresa and randy are the ot/mde folks. you may also see trang or andrea from mda and a dietian from walgreens. if you need tests, they will schedule them. if you've had tests and havent sent the results to clinic, try to take them with you...or the reports. these are very caring, compassionate people. as i've said before, you are in very good hands and can expect to get some answers soon. write down everything you want to discuss so you wont forget and have someone with you. blessings to you and your family.
    i would say your dr suspects something neuromuscular. there are many things besides als. i see your emg was clean so my guess s its something else. get to dr beson as quickly as you can!
    I would definitely say YES...go to San Antonio. My limb onset started around Oct 2010 & it took til Dec 2011 to finally get an answer to what was going on with me. I can't begin to imagine your frustration with all you have been through for 13 years.
    Your EMG being normal is what surprises me. I am in NO way any kind of an expert on ALS. It does seem as though all of us that had "limb" onset ALS have a "dirty" EMG. Surely the ALS specialist will be able to tell you yes or no (I do so hope it is NO) about ALS.
    I saw your post that said you have had something going on for 13 years and still not diagnosed. I was surprised. If you don't mind me asking....what were your starting symptoms?
    Hi Skyehy, I'm also an Okie. want to encourage you to attend the monthly support group for ALS in Tulsa. it's sponsored by mda. are you seeing dr beson by chance? his team is just great!
    Yes, that's the doctor who treated my uncle! Thanks for saying hi. Please tell me about her. I have heard good things.
    Hi there! I saw your post on the forum and sorry to hear your having so many problems with no diagnosis! You mentioned seeing a specialist in San Antonio. Is it Dr. Carlayne Jackson? I'm curious because that is my ALS specialist and I can tell you a lot about her.
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