Newly Diagnosed

[Wburell]

Just wanted to introduce myself. I have family history as my father had Als. About a year and a half ago I developed foot drop from what was thought to be a wakeboarding accident. Went through all the normal tests, emg, nerve conduction, etc. Was told I had nothing to worry about and I had caused nerve damage.

Fast fwd a year and a half and my leg wasn't getting better but was worse. Severe atrophy and my ekg came up with severe damage in my left leg and mild symptoms in my right. Fasciculations all over (moreso with stress) and the doctor broke the news this morning. Not unexpected at all. I show no upper motor signs and they feel it maybe be possible for another issue but doubtful due to my family history.

I'm 33, married, and have 2 wonderful boys who are 9 & 11. Seems crazy to think that 2 years ago I was more worried about wakeboarding and playing with the kids than how long I'm going to be around.

Anyways I just wanted to introduce myself. I've been lurking in the shadows but doesn't seem like theres much need anymore. Sadly I feel no different. I've been so fearful for over a year and with knowing it was in the family I feel I've accepted my fate and trying to put my future in God's hands.

 

[swalker]

Very sorry to welcome you here, but welcome nonetheless.

Since you have been lurking in the shadows for awhile (as I did while being diagnosed), you already know what a wonderful resource this is.

If you have not gotten a second opinion from an ALS specialist, I encourage you to do so.

Steve

 

[Nikki J]

Sorry to welcome you. Agree a second opinion if you have not yet had one. Dr Bedlack at Duke if you have not seen him already.

Have you been genetically tested? If not I encourage you to pursue this especially as there is a current gene blocking trial for sod1 which is the second most common cause of FALS

 

[DaChief]

Sorry to welcome you here but welcome nevertheless

Bruce

 

[Nuts]

I'm so sorry to welcome you. So young...

We are north of you, at Lake Gaston. As Nikki mentioned, if you haven't seen Dr. Bedlack at Duke, you should. My husband receives fabulous care there.

I'm glad you've spoken up. Sometimes it just helps to communicate with others who understand.

Becky

 

[lgelb]

Sorry to welcome you, but agree, whoever gave you the first opinion, you should have a second. Sounds like a wonderful family and I'm sure they will give you strong support.

Best,
Laurie

 

[Wburell]

Thank you all. My referral to Duke went in today. Was told it could be 2 weeks or 3 months before I get in. I have the genetics test in hand but was told to return it and Duke would be able to do it with better insurance coverage. Not sure how true that is but going to talk to my awful insurance this week as they've already denied my afo for foot drop.

And yes this has been a wonderful resource and given me some great reading. My dad didn't make it 3 years so I feel blessed that I was told I'm progressing slowly.

I've heard great things about Dr. Bedlack and hopefully can see him soon.

 

[soonerwife]

So sorry to welcome you but as you already know, this is a great place for support.

 

[KimT]

I'm curious if anyone in your family, other than your father, had ALS. If you only have lower motor neuron signs, that might be a good thing. Dr. Bedlack will sort it all out for you. I think it's a good idea to let Duke do the genetic testing, too.

I hope you can get there earlier, rather than later. I was surprised that I was able to get an appointment for a third opinion at Johns Hopkins in three weeks. It's possible.

Please keep us posted and know that you are in my prayers.

 

[frankb]

Sorry for your diagnosis, but welcome to the Forum. You are among friends.

 

[scaredwifetx]

I am so sorry about your diagnosis. Welcome! You have found a wonderful support system.

 

[Wburell]

I'm curious if anyone in your family, other than your father, had ALS. If you only have lower motor neuron signs, that might be a good thing. Dr. Bedlack will sort it all out for you. I think it's a good idea to let Duke do the genetic testing, too.

I hope you can get there earlier, rather than later. I was surprised that I was able to get an appointment for a third opinion at Johns Hopkins in three weeks. It's possible.

Please keep us posted and know that you are in my prayers.

Kim unfortunately my father was adopted so we don't have any family history past him which was a big issue when he was diagnosed. Was so ironic that I walked into my last EMG and the doctor performing it actually worked with my father at Duke 20 years ago and remembered the last name.

 

[Wburell]

Not sure if anyone cares but I've setup a website/blog of whats going on in my life. Throughout life I've found that writing my thoughts down helps me process things and let go of anxiety. Website is A Day with MND ? A diary of my MND Life

 

[njk0407]

I'm so sorry for your diagnosis. My 36 year old husband was diagnosed in May and we have 2 children also. It's devastating and you your whole world has crumbled around you. I can promise you that you still will have good days with your family and days and moments of happiness. I do know exactly what your wife is going through. I'm so sorry this is happening to you and your family. I see that you live in Raleigh and your local to us. We're in Apex. If you or your wife would like someone local to talk to too I'm here for you. My cell is (716) 720-2913.

 

[njk0407]

My name is Nikki.