The ALS Association

2013 AAM Stories 566852227

Tammie L. Anderson , South Carolina

Hi my name is Tammie Long. I just recently was diagnosed with ALS. I have the bulbar onset, with speech problem, swallowing, and breathing. I spent since May of 2014 trying to get a diagnosis. I first noticed my jaw was hurting so I thought it might be wisdom teeth, so I went to a dentist and he said no. He thought might be TMJ so he sent me to an oral surgeon. After 10 minutes of checking me out, he told my husband to get me to a doctor soon and said it could be a nerve problem. After this my mother law noticed my speech changing gradually. I went to primary doctor here in Anderson, S.C., and she said needed to see a speech therapist for evaluation and a neurologist. Well as we all know it takes time to see doctors and specialists now. So after July 4 I finally got to see the speech therapist. After evaluation she called and made me an appoitment with a neurologist for sometime in August. I had blood work twice for all different things, 2 MRIs that were normal. Emg with nerve conduction study test showed weakness in right arm and right foot and tongue. He saw me again after he had some other blood work done and said he needed to send me to a specialist in Augusta, Ga. I finally got to see Dr. Rivner at GRU on Oct 12 and let me tell you he did all kinds of test and then had a respiratory therapist come in and do a breathing test on me. He then came in and talk with us and then compassionately told me and my husband he was 85 percent sure it was ALS. I went numb inside. I wanted to scream but could not. He then said wanted to schedule me for a muscle biopsy for Oct 28 to confirm the muscle damage. In the mean time we went home, and life has been so stressful for us. Insurance has given us a hard time but yesterday finally approved me for the ventillator and humidifier, and my doctor has said I will need the peg tube for losing weight a lot as I am down to 119 pounds now. He is put me in touch with the ALS group in Augusta Ga. I go November 14 for first visit. Since we found out I have cried an ocean as they say. I am on meds for this and for spasms and twithches and excessive secretion med. I tried the ALS drug and had a bad rection to it so can't take it anymore. I reached out to God in my prayers just to give me the strength to be strong to be able to tell my family and my son. Telling him was the hardest thing for he is 25 years old, and our bond is so strong. He has been so understanding and text and calls to check on me all the time. My friends and family have been so supportive and I have the most wonderful husband. He has been so strong so far with this, and I just pray all of us with ALS can find the passion to go on and keep living. I have and I am going to continue to fight this battle until my God says its time to come home to heaven. I found once I made this peace with myself life is a lot better.

 
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