As of Tuesday

[Ryan mc]

Hello everyone!
I was diagnosed with ALS on Tuesday by my Neurologist. I was having trouble with my left leg for about a year and a half. Then with my left arm for about 6 months. Been seeing him since December. We did a EMG on December 23rd. Normal. Then he noticed atrophy in my left hand last week. He wanted to do another EMG. On June 4th, dirty. While he admitted he's not a expert in MND's, he was 99% sure it was ALS. I'm from Milwaukee so fortunately we have a great ALS clinic right here in town. I have a appointment there on July 16th. Hoping they find something else, but I feel he's right in his diagnoses. Obviously this was devastating news. But I'm not gonna let it win now. I'm going to live my life to the fullest! I'm 34 and have 3 children so I'm gonna spend all my time with them! I happy that I found this board so I can talk to people who have gone though some of the battles I'm about to! And to help those who may need it. So hello and I'm "happy" to be here

 

[Atsugi]

Hello Ryan, you're welcome to be here. Sorry to see your EMG is dirty. I hope they find something else on your appointment other than ALS. Your history of the illness is rather different, except the leg strength problem is pretty classic ALS. But then, you're pretty young so we can have hope the clinic will find something else. Good luck.

 

[Santa joe]

Ryan, please let us know how it goes with your appointment. You are not alone. Everyone will be here for you. Such an amazing group of pals and CALS to help you along this journey.

Debbie

 

[Jo123]

Hi Ryan,

My Pals came across your post and showed me. I felt I had to write. My boyfriend was diagnosed 3 yrs ago at age 29 with ALS. We also lived in Milwaukee when h was diagnosed, probably lived within a few miles of you…We lived on the St. francis/MLE border right by Tippecanoe park. Since then we have moved out to the suburbs to a house that fits his needs. Please let me know if you or your wife have any questions about the resources here in mke or really anything--would be more then willing to help.

 

[Barbie]

so sorry Ryan. I hope your 2nd opinion is not ALS. Be strong for your kids--they love you very much!

 

[SMP51]

Hi Ryan,

My Pals came across your post and showed me. I felt I had to write. My boyfriend was diagnosed 3 yrs ago at age 29 with ALS. We also lived in Milwaukee when h was diagnosed, probably lived within a few miles of you…We lived on the St. francis/MLE border right by Tippecanoe park. Since then we have moved out to the suburbs to a house that fits his needs. Please let me know if you or your wife have any questions about the resources here in mke or really anything--would be more then willing to help.

great peeps around this place!

 

[Ryan mc]

Thanks all!
Jo123, I'm wondering if your PALS has been to Froedtert Hospital? If so, how was the experience the first time? That's where I'm going on the 16th and just wondering what to expect.

 

[BlueEyesOhio7]

Ryan,
Hello and welcome. Sorry you have to be here. I was diagnosed June 16th, just a week and a half ago. This is a great place to come and get support. Your attitude is GREAT! Come here often for inspiration. Good luck, I will pray for you.

Lynne

 

[zoohouse]

Ryan, sorry that I haven't welcomed you sooner, but there have been so many new PALS that I missed some. Keep a good sense of humour, and continue your great attitude. It has been 2 years for my husband, and our life has never been more busy, or fulfilling. I have enjoyed our new ALS family, and their quirky sense of humour. There is great advice on here to prepare yourself for what is coming. Welcome.

Paulette

 

[MaxEidswick]

> I have enjoyed our new ALS family, and their quirky sense of humour

understatement!

 

[Trixie80]

Hello Ryan

I am also 34 and was diagnosed in march 2014; 3 years after first noticing right ankle weakness and foot drop. I spend time with my family and have continued to travel. Have been trying to figure out whats gona happen next, which i now know is near impossible.

 

[bigmark1954]

Whaz up Ryan.....welcome to our loving family.

 

[Leslienu]

Hi I am praying you have been misdiagnosed. My 59 yr old sister was just diagnosed with ALS 6/25/14. My heart is breaking! I am happy there is a forum I can come to and read everyone's experience and inspirations! God Bless everyone here!

 

[Music67]

Hi all!
I am like a lot of you - I was diagnosed a month or so ago after over 2 yrs of left arm & ankle weakness. However, I find it significant that it has never spread beyond my left side. I have no fasciculations on my frontal area & full strength on my right side as well as normal breathing & speaking abilities. After a bit of nagging to my neurologists I am finally getting lined up for an Ivig treatment as I figure that is the only way to know for sure whether or not I might have a "copycat" disease such as MMN which can respond to such a treatment. I strongly urge anyone who has a similar condition that remains stable to insist on this as well despite any ALS diagnosis as a large percentage of MMN people were originally diagnosed with ALS.

 

[MaxEidswick]

>After a bit of nagging to my neurologists I am finally getting lined up for an Ivig treatment as I figure that is the only way to know for sure whether or not I might have a "copycat" disease such as MMN which can respond to such a treatment.

Ryan, you might want to search this forum for IV IG --- there has recently been a lot of useful information ...