jamiem
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  • Hello, it sounds like your EMG did not come back good. I am sad for you. Since August 1st I have been going back and forth will the "knowing" and when we didn't know anything. At first I just wished we could turn the clocks back... but my mom has had this for a year. I am glad to know now, but in a way it's harder to realize what she will have to go through. Yet, it also forces us to just enjoy what precious time we have. I work M-F, but come Saturday at 6am... I am up and on my way to see her... and I make sure to make it special or just be there to make her smile.
    Have not spoken with you lately. Barb said she talked with you for a minute and you were going to call her back so she was kinda worried about you. How are things? sherry
    I saw where you got the ALS diagnoses last Thursday. You probably felt like I did before the words were spoken out loud. I had been hoping & praying for ANYTHING else but knew deep within that I had ALS. It just makes it so REAL to actually have a Dr say it out loud. You will be going through so many emotions so give yourself plenty of time to get back to your new "normal". It will come!! GOD is FANTASTIC and HE will get you through this!! Marta (Ms Pie) mentioned the ALS only facebook groups that have recently started. They are really helpful too & of course this forum rocks too.
    I'm so sorry for your diagnosis but you are in the right place. There are a few good FaceBook groups if you're interested. Hugs to you Sweets!
    Hi ! How are things going with you? My dad who has ALS will be coming home for a short visit over Labor Day weekend. My brother has a class reunion so he's bringing dad home. My dad is from Illinois but has been staying in Dallas with my sister and her family. My brother also lives in Dallas. Unfortunately, dad and I come from a small town in Illinois that doesn't have any ALS facilities. I will be married to my husband for 19 years Sept 11th. We have three children. Our twins Matthew and Julie will be 15th on Sept. 19th and our youngest son is 8. Write and tell me more about yourself. Kim
    hearing tests. I can barely hear in my right ear and have some problems with my left (one reason i have not called you) The Dr. said I have fluid in my right ear. He prescribed med and said if it didnt clear up he would put a tube in next month. Drop me a note and let me know how things are going with you. Barb is back home. I still want to go to Texas and visit while I am able to drive but my husband just lost his job. If he doesnt get something soon I won't be able to afford to. Oh well....whats next? sherry
    Hi Jamie..I wrote you a long note a couple of nights ago, then hit the wrong button and lost it all. Was really tired so I just gave up.

    Well Barb went with me to see Dr. Lee at Vandy.Wow all these Dr.s look like kids but he was very knowledgeable. He told Barb that he would be more than happy to be proven wrong but after looking at the emg and after examination he could only conclude that I had ALS. He scheduled me to come back to the clinic the first friday in November. He did say that I was in the early stages, that most patients that he had seen had gone thru so many outside drs. that are not familiar with ALS that by the time they finally wound up at vandy they were in much worse shape than I am in. Of course he said there is no way to tell how this stuff will advance or how fast. I spent the morning before seeing Dr. Lee having
    I will be 54 next month and that is my one and only grandbaby. Hubby and I love her soooo much. Grandkids are the best aren't they? We have one son that will be 30 in November and is not married and no kids. Our daughter is 24 and lives next door with our son in law and our sweet granddaughter. ALS is runs in your family?
    I understand what you mean about insurance being crucial. I drove myself insane for weeks trying to read up on Medicare and figuring it all out. I am having an excellent day today and happy that I am about half way thru pricing my junk for the yard sale next month. I am right handed and it seems to take me forever to write a price on sticker and stick it on something. My left hand is still ok thankfully so that helps alot. I have all the time in the world so I will get it done. Is the baby in your picture yours? How has your day been? Is it as dry in TX as it is here in KY?
    I know you must be beyond frustrated of not being diagnosed with ALS (not having ALS would be FANTASTIC) but yet unable to work and at the end of the month you lose your health insurance. Have you applied for Social Security Disability? I am assuming you have since you know you can't get Medicare in 6 months unless you have ALS. You are between a rock and a hard place right now. Pray and have faith. Soon a hard rain will come and wash you out from between the rock and hard place!!!
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