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wow. so sorry to hear. wishing peace for the family...
 
So very sorry for you and your wife.
Beckysuenc
 
Sorry for your loss Hangingon.
 
so sorry for your loss. prayers for u and ur family
 
I am very sad for you. I know how you feel. Mom mom was diagnosed on 8/1/12, then has a 2nd opinion on 8/23/12 at the University of Michigan. When I took her there, I made the 8 hour trip special for her and we enjoyed ourselves stopping along the way, making memories. Since then, she is still loosing weight, at times cannot be understood and went from walking quickly to using a walker at all times. When they tell you she could have 2 years, and then you see the downward spiral so quickly, it's devistating. Take care.
 
Thanks for the thoughts, I now have fasciculation’s in my right fore arm it seems this is moving so fast, what ever it is.
 
sorry posted in wrong thread its monday
 
I have been a caregiver for my wife for over 2 yrs. She has had her ups and downs. This last episode caught me in unbelief. On a recent Tue. she was evaluated by hospice and told that she was doing too good and was going to be bumped off the program. This despite the increasing problems with swallowing. Two days later, she was incoherent and unalbe to drink or eat. Yes, it can happen that fast! Over a horrible weekend, I soul searched and hurt for my wife for whom I could not help. That is the most terrible feeling. Finally, I called hospice and she went back to the center. She has been there two days and her condition is not good. She continues to be out of her head (FTD) and will not eat or drink. Her Dr., who is a neurologist, said that she probably would not leave hospice. For those in doubt about first hand experience--Don't be. The kind people on this forum see what is going on and they do not lie. A patient may change in an instance and it is just the nature of this beast of a disease! Hang tight all that are called on to be strong.
Please Help Anyone? My name is Lee Algee and I live in Memphis, TN. I have just exsperieced probably the worst 48 hrs of my life. I will give you the basics first and move forward. My struggle over at least the last four years of my life came to a drastic conclusion today. When asked by friends and family about ALS I did my best to tell them I may have the disease and showed them physical conditions also. It is amazing the lenghts people will go to in order to deny this. I cant get in to see a Dr. about this cause its hit so fast but for me I dont need a stamp if approval, I know what I have. I have known for years that I have had to deal with all the nasty little symptoms this beast has to offer. In order to try and prove my disease to my family I asked them to do one thing. Get online and get a full copy of ALS symptoms. I said now not every symptom on this list I have but every symptom on this list I have. I believe if you could show this and all your medical problems over the past few years to the people that need to know you could spend more quality time than looking for a magic cure. Now yes get a Dr.'s diagnosis but dont run here, there and put your life on hold to wait for some stamp of approval. Go live
That being said, I put the final piece of my puzzle in yesterday. Sure cant run and hide from pressure sores that inflame and rip your muscles away plus pressure sores that shoot bolts of pain across your body. I went to the Dr. Today and he says aww shouldnt be a problem can you come in for some tests and if your married bring your wife. I didnt get to go to medical school but I still know what that means. Oh, and just so your wondering why did you wait? I never waited.. Ive been to at least 40 dr.s in the last 5-6 years. Everything on my ALS checksheet was there then and is now. I will not go into Dr. Discussions at this point but what I BEG of anyone- Can you please let me know where I stand? Bad last two days.. Right now as we speak I can feel flesh being taken from me. You say this hits fast am I there already? Multiple pressure sores on several areas. 1 particular 1 on right side upper leg shoots the pain. Visable diteriation on both arms by biceps and both lower buttcheeks. Feel to be losing muscle control right now...i could go on but I think maybe you could give me a clue. Taking the kids out of school tommorrow and want to be with them forever but in this lifetime, what am I looking at?
 
Lee, I'm sorry, but your post has me a bit confused.
 
Lee, you need to make an appointment with Dr. Bertorini. He is the ALS specialist here. You will be sent to him if a neurologist suspects ALS. If there is any question, Dr. Bertorini will send you to Mayo clinic. If you have ALS, you need a firm diagnosis. There are many services in Memphis available to you if you have ALS.
 
Lee, try posting in a thread started by you so people will see it.

I read your other post in the wheelchair thread. What you describe are not pressure sores. ALS doesn't cause dark urine or swollen glands, either.

Please see your doctor. I feel confident you'll find an answer other than ALS
 
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