New phase

[4tloml]

After 1 1/2 years, my husband heard the words "definite ALS" yesterday. We were not surprised--actually a little relieved. We'd known for awhile, but for as long as it went unnamed, it went untreated while it continued to progress and he continued to go to work everyday.

During that journey, docs went from ALS, to "not quite ALS," to Multiple System Atrophy, to not quite MSA, and now back to definite ALS. But this time we walked out with a prescription for riluzole and a referral to the clinic. And to my husband's great relief, an offer to fill out any disability paperwork needed.

We are both so grateful for all the information we've gotten on this site. Because of it, we had prepared a bullet-point list of symptoms w/dates and progression and an entire list of questions. And we're grateful for the doctors who spent 5 hours with us yesterday doing the EMG/NC, checking and rechecking clinicals, studying history of symptoms and tests, consulting with the "MSA Doc" and then answering every question we had.

Now we're on to "Phase 2."

 

[MaxEidswick]

>Now we're on to "Phase 2."

so sorry to welcome you to the club!



Max - Friday, November 07, 2014 11:00:00 AM

ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013


.

 

[Nikki J]

I am sorry that he has ALS but since he does good that you got riluzole SSDI and clinic going. We are here for you

 

[SusanSt]

Sorry to welcome you.

 

[affected]

So sorry you have officially joined us, but so glad you used this place to be so well prepared for yesterday.

For my Chris it was a kind of relief to finally get that diagnosis as he knew in his heart, for me it was a bombshell dropping as I had been in complete denial.

As you say, next phase now, you have named the monster.

I wish there were treatments in reality that he could have access to now, riluzole may help and I hope it does, but accessing help from the disability paperwork is a true relief.

Here we go together now

 

[gooseberry]

So sorry you got the diagnosis but at least now you know what your dealing with. Sometimes just knowing is a big relief!

 

[Gembead]

Welcome, phase 2? I know what you mean,we are working our way thru the ins and outs of this disease, it so good that we can ask questions and share our thoughts here.
Love Gem

 

[davbo49]

your here now, what more can i say.

 

[poppies]

Welcome. The next few months will be a rollercoaster as you move through the stages of grief. Sending you energy and strength to get through it. Remember you are not alone. We are all here for you. Thinking of you.

 

[gooseberry]

We are all here for you. Rant, rave, ask questions, we will be here. A scary time for us was seeing things changing and not knowing what was happening. ALS sucks. As Max says, watch out for the anxiety and depression, it sneaks up on you. It will be a rollercoaster....ours seems to not stop. Everyone is different and this group is great at helping with all the different problems.we all.encounter. Very importan thing though, do your best in all the craziness to take care of yourself. My doctor told me the other day that without the caregiver, it all falls apart. That caregivers must take care of themselves as well as their pals. She stressed eating well, getting in 30 minutes of walking, and sleep. Get help if you cant achieve those...medication, ready made salads and meals at the grocery, a walk with your pals....

 

[4tloml]

Thank you all. My husband just asked for the link, so I think he'll be coming to "meet" you all soon. I think he'll find this community sustaining, too. I'm so grateful for you all.

 

[MaxEidswick]

>My husband just asked for the link, so I think he'll be coming to "meet" you all soon

I look forward to 'meeting' him ....

 

[affected]

that is great, he will find his own supports here and you will have double benefit