Newly diagnosed

[Mel35]

Hi everyone. I wanted to introduce myself to the forum.. My name is Melissa. I posted a couple months back, or so, in a different section asking "Is This ALS?". Unfortunately for me, my symptoms are progressing in my right limb, and now have noticeable fatigue in my neck and upper back. Typing is slow and difficult with my right hand; but I'm glad to still be able to post and use the keyboard.

I was diagnosed with ALS on June 29, 2016 in a fairly quick process. My symptoms that first made me question things started in November 2015. I started seeking medical opinion/treatment for weakness in my hand and arm in March this year. Two separate ALS Neuro's (one in Omaha, the other in Lincoln, Nebraska) have both given the ALS diagnosis. I'm considered FALS, because my dad had ALS, as well as a few of his family members. I'm 35 years old and live in Omaha, NE with my husband and a five month year old. We've had ups and downs getting used to the diagnosis and my limitations, especially trying to care for a baby. I started on the Rilutek; with upset stomach occurring some days. I'll be getting my liver levels checked very soon. I've been pretty fatigued; almost every day I'm very tired at some point. (It could be the medicine; or caring for a baby and early mornings; or the disease - probably all of the above.)

I meet with my Neuro dr this next Friday; and we'll be looking into genetic testing - where I'll go to get it. My insurance denied covering the testing; so we're going the research route.

I've recently been approved for disability and already received the Medicare Part A and Part B care, with coverage effective 12-1-16. I'll need to read up on all that it covers, because my work is terminating me (and my benefits) at end of August.

Thank you for allowing me to join in the discussions.

 

[swalker]

Very sorry to welcome you here, but welcome nonetheless.

As you have found, this is a great place full of wonderfully-helpful people.

Steve

 

[Lkaibel]

Hi Melissa,

Welcome. I think you will find this to be a very supportive group of people. My husband (age 66, non FALS was diagnosed on June 30th) at the University of Minnesota. I am particularly sorry to welcome one so young. I came here first as a DIHALS too. I think most on and off the Forum figured he had it, so as you may have, we sort of knew our answer from the early on.

There is much good advice and kind words to be had here.

 

[BlueTrain]

Hi Melissa - very sorry to welcome you here. I am young, too, but am likely SALS (although I haven't undergone genetic testing). I pray that your progression is slow.

Thomas

 

[Nikki J]

Hi again Mel. I know we already talked about it but I am so sorry

 

[faithandlove]

Hi Melissa,

I'm so sorry you were diagnosed, and wish you all the best. Having a baby and having ALS - no wonder you are super tired.

Hugs,
Deb

 

[KimT]

God bless you, Melissa.

Regarding your insurance, make sure that you get a good supplemental Medicare GAP Plan. Medicare will only cover 80% of the durable medical equipment you will need. A good GAP plan should pick up the rest. You will also need Medicare Part D for drug coverage. An alternative is to to with Medicare Advantage. Please make sure you meet with various companies and compare plans ahead of time so you will know which on suits you best.

Hoping you have a very slow progression.

 

[scaredwifetx]

Welcome to the forum. The posts about supplement insurance is very important. I also pray that your progression is slow and hope you have a lot of family support. Of course you know that any questions or concerns you have will be addressed here. I have not seen a post yet that can't be answered and everyone here really wants to help. Make sure to get enough rest as that is so important.