Just Diagnosed

[AustinMJ]

I'm 41, and live in Austin with my wife and 3 kids. I spent March-June going from Doc to Doc trying to figure out what was wrong with me. I then had an appt. with a Neuro... She they told me she thought I had ALS and I needed to go to a ALS Clinic. I got an appt. with MGH in Boston the next day and flew to Boston. I spent two weeks meeting with Docs, took all kinds of Blood test... but the EMG was the key test along with my hand symptoms. ALS was confirmed. I'm still waiting on a Lyme test... still hope .

 

[kmendsley]

I am so sorry to hear of your diagnosis. But I hope you feel welcome to the forum. There are many people on here who will listen to your questions/concerns/rants/raves and whatever else may be on your mind at the moment. Once you get the lymes test cleared let us know as well. In the mean time, you can search through general MND/ALS info for more information and ask questions to other "PALS" under this section too. Your family might find the CALS section esp. helpful as well a little bit further down the road. Again, sorry you had to join the club, but you won't find a nicer group of people to help support you through it all.
~Kell Bell

 

[Miss]

I'm praying right now that it is Lyme disease. If not, we are here for you.

 

[notgivnup]

So sorry about your diagnosed, not the bus anyone of us had asked to be on. But we are here for each other with care and understanding. We will help you and your family anyway we can. Prayers to you and yours. ((HUG))

 

[brooksea]

Very sorry about your diagnosis. Hugs to you, your wife and kids...

 

[Ms. Pie]

I'm sorry as well for your initial diagnosis. I pray it's not ALS. Hang in there Babe and if you have any questions about anything just ask.
Big Hugs to you and yours.

 

[Sequoia]

Hope is like going to a tropical island and having a vacation in the midst of troubles....so hang on to the hope it is Lyme disease! But if it turns out to be ALS, we are here for you, each one traveling the same road, some far advanced some just starting out. Good luck and God bless!

 

[tomby]

So sorry to hear this, but glad you found is forum. It has been a big help to me

 

[susanf]

Sorry about the worries. I hope it's lyme. If not, like the above friends said, this is the place to be. Many of us have families like you. I have and 11 year old.
It's a stressful time but try to stay positive.
Susan

 

[KissJ]

So sorry! Your story is so much like my husband's progression. He was diagnosed in May and then at the ALS Clinic in Pittsburgh, PA. When I asked for the Lymes testing the doc's reply was that it wasn't Lymes! He told me he could test, but it wasn't!
For you, I hope that it is Lymes! That is what we all wish for. If not, we are here for you.
Anti-depressants sure are helping us through this. After the initial shock, and very difficult time we are positive and enjoying what we have. We decided to not ruin today with worry about tomorrow.

 

[AustinMJ]

Thank you all for the support. I know anything is possible. I just wish there was a better way to fight this beast. I've always enjoyed the underdog

I'm sure I'm going to get to know many of you over the next few months. I appreciate all your support in advance.... and I certainly promise to support all of you. I got your backs!
God bless,
MJ

 

[Trixie]

Dear MJ,

So Sorry to hear of your probable diagnosis of ALS. If you can, try going to an ALS or MDA/ALS clinic. Don't forget to ask about two new promising clinical trials for ALS --- NP–001 and Phase 3 Dex trials. There is a short window of time when you can apply the clinical trial, so if you are interested, I would suggest you apply as soon as possible.

Good luck and I hope it is anything else except ALS.

Trixie