29 female newly diagnosed

[amyezar]

Hi. I was just diagnosed Monday with ALS and as you all know, my world has been turned upside down. I have a 6 year old little boy who I am very close to. My husband and I were separated for the past year and he's moving back in to take care of us. I'm so scared and I just know it's not ALS. Everyone keeps telling me I'm in denial but I'm not sure. I'm sure you've read hundreds of posts just like this but I don't want to be a statistic. I want to be the miracle. My mother died when I was 12 and I promised myself my son would never grow up without a mother.

 

[vickim]

I am sorry you have had to find yourself here. Were you dia gnosed by a neu rologist or at a als clinic? If by the neuro, see if you can get in a als clinic for a 2nd opinion.

There are a lot of great people here and we are ready to help if you need us.

 

[ottawa girl]

Amy,

I'm so sorry - I hate ALS - but never more than when it impacts young families. I can't imagine what you're going through vis a vis your son. What I can tell you though, I know of several separated and divorced couples who have reconciled in order to fight on as a team; it's worked very well for everyone. You may require some family counseling initially though, to ease the way. This would help you both navigate this new reality - starting with a clean slate. Please also check out ' hope loves company' on face book. They're dedicated to helping young children who share their homes with the monster that is ALS. There, you will find a couple of children's books dealing with ALS.

I hope you do seek a second medical opinion. This may help you - either get a different result - or help you accept it and move back to the business of living. There's a whole lot of living to be had, Amy.

There are a few other young forum PALS here who will hopefully chime in. Clearly, ALS in a young family is a much different situation, then most of us PALS share. But nevertheless, we are here for you!

 

[LinCan]

Hello. I am so sorry for your diagnosis and the challenges you face. Depending on how confident your are of your neurologist and the tests you've undergone, you could seek a second opinion. I certainly understand your concerns for your little boy. I guess the only comfort I can give is to reassure you that after the first few weeks of shock and fear comes a more calm and peaceful time. From what I understand every case is different, and there are PALS who progress slowly. The only advice I can give is to make every moment count with your family, and perhaps do some videos of fun activities together.
I wish you many years of love and fun with your family.

Linda

 

[LinCan]

hi, me again. It just hit me that you live not too far away from me. If you don't mind me asking, where we're you diagnose. Were you referred to an ALS Clinic? A clinic would be a wonderful source of information and support for you.

Linda

 

[amyezar]

Thanks everyone, I really appreciate it. I was diagnosed at U of M by a team of neurologist there. The next step we are going to take is getting a second opinion at the Cleveland Clinic. The drs at U of M were very nice, helpful, and compassionate but so quick to diagnose me. I'm completely atypical and just pray that they are wrong. I'll accept it when I have to but I still feel like there's hope.

 

[ottawa girl]

There's always always hope! For everyone.

 

[HisWifeKate]

Amyezar,
That's exactly how I felt about my husbands diagnosis! He was 30 at the time and the diagnosis came out of left field. He also was diagnosed at UofM. I hope you are right and this isn't what you have. Please let us know how it goes!
Kate

 

[amyezar]

They diagnosed me and set me up with the ALS clinic. The doctors there were great, I cannot express how much I do like these doctors. I feel that once you are diagnosed though, they work on helping you die. I want to find a different approach, I want to find someone that wants to help me live as desperately as I do.

 

[MaxEidswick]

Thanks everyone, I really appreciate it. I was diagnosed at U of M by a team of neurologist there. The next step we are going to take is getting a second opinion at the Cleveland Clinic. The drs at U of M were very nice, helpful, and compassionate but so quick to diagnose me. I'm completely atypical and just pray that they are wrong. I'll accept it when I have to but I still feel like there's hope.

Amy Dr. Feldman’s clinic? She has a great rep and is doing some serious clinical work with stem cells. I tried to get into the study, but am too far down the road to meet the FDA screen. Probably just as well as it looked pretty grisly.

Our hearts go out to you and your family. As others have said, a second opinion can not hurt. Best of luck. Hope is important for us all.

Max

BTW, these youtube links on the ALS may help:





and

https://www.alsforums.com/forum/newly-diagnosed/21793-must-read-threads.html

I found the links to them here (from Elaine, I think).

You are not alone.

Max

 

[amyezar]

Hi Max! Thank you for all the info and I will be watching the videos tomorrow. Yes, I was diagnosed by Ann Little at Dr Feldman's clinic. I am interested in trying some all natural things before I start trying anything clinical but I will do anything I can. I need to be here for my son. All your kind words have helped me and I'm sure that once the shock wears off, I'll be able to focus more.

 

[HisWifeKate]

For a different approach.. I'd check out dr. Ledtke at the Born Preventive Health Care Clinic in Grand Rapids. It's a 3 hour drive for us but we find her helpful and caring. Might be something your interested in.

 

[John1]

Hi Amy,

I wish you good luck on a second diagnosis. If it is confirmed, the only words I can add to those expressed previously is that the first several months following diagnosis are the worst of all. Things do get better. The feelings of total loss, despair and hopelessness are gradually replaced by feelings of hope, awareness of living in the now (something that many people never learn all their lives), and even a form of contentment. It is wonderful that your husband is coming back to live with you. I actually met the love of my life, and now my wife, AFTER my diagnosis.

I hope you come to find the people on this forum a wonderful resource for you.

 

[Isaiah535]

Hello. I am too a young mom. My husband was diagnosed last December. You are not alone. We have chosen to be open and honest with our kids. We pray for each other and encourage each other and hold each other when we need to cry. I will be praying for you and your little ones.

 

[Gerri]

Hi. Always keep your HOPE! I too go to the U of M ALS clinic and have found them to be very kind as well as helpful. I went there for my second opinion. I was shocked to learn that Michigan has one of the highest ALS rates in the country! Remember to keep your focus on the here and now. Life is still amazing even when living this monster! Prayers sent for you and your young family. Hugs