Evaluation at Vanderbilt & diagnosis

[Mlock]

Today I had my long awaited evaluation at Vanderbilt. There most of the day. I saw 2 neuromuscular specialists and 2 fellows. They were very thorough and reviewed all the MRIs and lab work. I had another nerve conduction and EMG. ( my third ones). Lower neuron problems in at least 3 parts of my body and upper neuron signs as well. They all agreed that I have ALS. My son, a MD, was there with me and asked some good questions.


So, on to the ALS Clinic here in Huntsville. If I don't like that, they told me I could always come back to Vanderbilt. I know I am going to have many questions. And I appreciate the help I have already received.

Will start on Rllutek Monday when the pharmacy receives it!

Very, very scared but not surprised. My family is rallying around me.

Wendy

 

[Nikki J]

I am sorry to welcome you Wendy. Of course we were hoping for another answer for you. I am glad your famiky is there for you. We will be here for you as well so don't hesitate to ask questions. Have a look through the stickies when you feel up to it. Some of us had initial side effects from rliuzole that went away. There are those who can't tolerate it but do know a lot of us were fine after a few weeks. I found the side effects mild and transient and I think it helped me. Fingers crossed it helps stabilize you too!

 

[lgelb]

Very sorry to hear, Wendy, but so glad your family is on the case. You will likely build new bonds with them, some special friends, and people you don't know yet.

Welcome.

Best,
Laurie

 

[Mlock]

Thank you, Nikki.

 

[Mlock]

Thank you, Laurie

 

[scaredwifetx]

So Sorry that we are welcoming you. This forum is wonderful and supportive. Any question you need to ask will be answered here. Anytime you need to vent you will also have support here. I hope everything goes well for you at clinic. my thoughts will be with you.

 

[affected]

I'm sorry that you ended up with this diagnosis Wendy and we are now welcoming you to the family.

 

[fionae]

Dear Wendy,

I'm so sorry for what you are going through.
We are here.
Such amazing, caring, knowledgeable people are in this forum family.
I'm sorry that you are in the position of becoming a part of our
family, but you will find us there for you.

Sincerely,
Laura.

 

[swalker]

I am so sorry to welcome you here, Wendy. As you know, it is a great place to be (though none of us want to be here).

Steve

 

[frankb]

So Sorry. Wendy. I was fortunate to be diagnosed fairly early on and started Rilutek right away following second opinion confirmation.
Really believe that starting Rilutek right away helped slow progression. Pleased that you joined the forum. You will find very helpful members (such that have already replied to your post)here and remember, no question is to small or too great to ask. Best wishes.

 

[BlueandGold]

Really sorry Wendy. You are SO not alone though. Allow yourself to feel the myriad of emotions that will consume you from time to time and keep telling yourself these emotions are all normal (not to the outside world but to this exclusive club). It's profoundly so hard to accept this diagnosis but that's o.k. You take it one day at a time as best you can. We are all holding your hand.

Vince

 

[Mlock]

Thank you all for your support. It has been an emotional day. I have texted some friends about the diagnosis but said I was just not ready to talk about and to give me a few days. Hope that does not offend them. Right now, I hope to live and enjoy each day but still plan for the future I know is coming where I will be increasingly limited in what I can do. Don't want to miss anytime with my family and twin grandsons who are just 16 months. And hope to meet another grandson this May.

I also hope to be able to continue my obedience training with my dog and get his Utility Dog title. I have started to use my mobility scooter to compete and he has adapted well to it. Thanks again! Wendy

 

[Gembead]

Hi Wendy, welcome to our beautiful and wonderful family, you will receive so much support and have your questions answered even if we don't know the answer. You will receive many virtual hugs and lots of hand holding.
Love and hugs Gem

 

[anderkling]

Hi Wendy, welcome to the forum. We are in this together. Because it is a rare disease, you may not personally know anyone else with it, but here on this forum we all share the same journey. There's a wealth of information here, and understanding. Good luck with Rilutek! I found it slowed down the progression, but there was quite a lot of nausea at first, which subsided after about 6 weeks. The time around diagnosis is scary, but it seems you have the right attitude. I was overwhelmed. But as time went on, I experienced that things unfold a little at a time, and there's always help and support each step of the way.
Charlene

 

[nebrhahe53]

So very sorry. Be thankful you have a loving family to help. I was diagnosed at Vanderbilt as well.