Old 04-27-2007, 04:36 AM #1 (permalink)
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Hello everyone,
First I would like to say hello to all the new members. I am still having alittle trouble navagating this site, but I am getting better. There is so much to read I find myself getting on this site and just reading.
My husband and I went to Ann Arbor, MI this week for the final appointment with the diagnostitian. We were there for two days. He had an emg and a mri. The emg confirmed the diagnosed of ALS. The MRI was to rule out any other things that may be going on. The MRI was negative. My husband started out with pain in his right leg March 17,2007 and was Diagnosed April 25, 2007. His is famial ALS and the criteria to warrent testing is alot less than with sproadic. Now from our first appointment April 13, 2007 the Dr was alittle hesitant to say much. At that time Bob only had alot of pain in his right thigh. And he was walking without alot of trouble. From that date to April 25th he has no feeling in his right leg from his thigh to his calf and needed to hold onto my arm so he would not fall. Even the Dr was surprised by the progression in two weeks time. The emg showed extensive nerve damage in his right leg and none in his left. It also showed denervation from lumbar 5 down. Any thoughts about the progression?
They called in 3 other Dr's for consult and all came to the same conclusion. Just last night we were at the table talking and he said "I just had shooting pains in my toes." That is very distrurbing to me and I am afraid.
I will say that the staff in Ann Arbor are very good and we were very comfortable there. We are now going to be going to the clinic there also. We do live 3 hours away but I think it will be worth the drive. Besides who doesn't want to go for a ride on a nice sunny day? Bob does have other symptoms but they are not promiment yet. Now for the kicker to all this. We found out last night that Bob's cousin Ann, who passed away in Feb this year, had the forsite to have the gene testing done. It was positive for the SOD1 gene. Any thoughts?
Sincerely Pat
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Old 04-27-2007, 06:41 AM #2 (permalink)
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Good morning Pat. What a thing for a family to go through! I like your reference to the sunny day, though. Sometimes it takes as much energy to stay upbeat as it does to give in to despair, and remaining positive has more return for the effort, don't you think?

Regarding your question, we've had some members on this site with familial ALS. If you do a search from the tab at the top of this screen you may find past threads that will help. this is a big adjustment all around so feel free to drop in at any time and don't hesitate to ask. folks around here are great with support, tips, and general information! Cindy
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Old 04-27-2007, 10:45 PM #3 (permalink)
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Hi Cindy

Thank you for the kind words. I am really having a bad day and I am hoping that I will feel better tomorrow. Bob has gone to his dad's to tell him the news and I am feeling alittle selfish. I am thinking that here are two less days I can be with him. I decided it would be better if his brother took him to see his dad for many reasons, one of which I had to work today. Well gotta go for now. Will be back later. Thanks again

Pat
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Old 04-28-2007, 08:40 AM #4 (permalink)
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Hello,
my husband was diagnosed this past september with ALS, he is 52, and was very healthy, had been a paramedic for 17 years. It does seem for us that things have progressed faster than we planned. The doctor says that disease progression is so different for everyone and there is no way to predict anything. (which drives us crazy)
Steve has significant nerve damage and pain in his left lower leg, and now pain in his arms upper chest, as well as right leg. Everytime something new occurs it is very scary- I feel so bad for him.
We are in a similar situation as you. We doctor at the ALS clinic at the Cleveland Clinic, 2and a half hours away. We don't mind the drive at all, it is time together to talk or just ride and enjoy our company together.
I am so hoping he will use this site to connect to others with this. I try to listen and be comforting, he feels like no one else knows what he is dealing with pain wise, and he is right. I go on what he tells me. It was nice to read your note. I am new to the site also and am very relieved when i read the threads- there are others out there dealing with what we are.
Jenny
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Old 04-28-2007, 12:50 PM #5 (permalink)
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Hi Jenny
It does sound like our situations are a lot a like. When I first found this site I didn't tell anyone that I was talking to other people about our situation. Then after we came back from Ann Arbor Bob said that he was comfortable there and felt at ease with the people because they seemed to know what he was going through and where matter of fact.
So I decided to tell him about this site and that I had been on for a few weeks. He perked up and said he wanted to be on too. He has not written anything yet. He is just reading for now. This site helps me so much. Being able to talk to others about this. I am full of all kinds of emotions that are affecting me in a way that I never thought I could be affected. To express myself is grounding. OK! I am having a moment so I will go for now. I think I will continue to think about the nice sunny day drive and wish all the same. God Bless us all to have the strength we need.
Sincerely Pat
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