I wish they'd hurry!

[Mathew]

I posted before under "Now What". Wish I knew more but unfortunately I don't . Other than all and every test has come back normal. With my nuerologist gone on vacation till jan. 20th, when I return for second consult, his assistant tried to get me in to Barnes for expert second opinion. Called today and was told Barnes is way too far out for new referrals , will have to do something else. They were gonna check with Mayo in Minn., and to see if my insurance would cover. Have PT consult jan. 21. I am still working, management gave me freedom to come and go as needed, and just do what I can do. Very generous! But now getting weak in hands arms legs and feet can't stand still for very long without losing balance . My right hand has already curled with little movement in fingers. Now left hand is close behind. All this since July! Don't know what to do. Thinking of taking all vacation and sick time, then start short term disability, which I'm lucky to have! Don't think I can start applying for SSDI yet, don't think I've been "officially" diagnosed yet, even though two nuero surgeons in ER then my neurologist are sure it's ALS. Does anyone have any advice to share with me?

 

[dalvin]

as for ssdi, once you've been unable to work for 6 months you can apply. it can be a long process though. mine was approved without an official diagnosis. went straight through first time and effective as of last march, didn't get diagnosis till august

 

[Santa joe]

Waiting for a diagnosis is an emotional roller coaster. It took my husband 6 months of going to various doctors to finally determine it was ALS. I start off being nice but I can turn into a B in a heartbeat. I had to be very assertive at different times concerning his health. He is now on SSDI. The turnaround on that was 5 months.

 

[pearshoot]

get started on ROM immediately, especially hands and fingers. contact a PT familiar with ALS for some instructions. Balance exercises, stacking air are things to do now. Private message me if you think I can help. Still walk with walker, talk, eat, and breath on my own.

 

[curtrill]

Matthew, You might check the Cleveland Clinic. They may be able to see you much sooner.

 

[Txgirl]

Once you get a diagnosis of ALS, you can apply for SSDI. A diagnosed of ALS will get immediate approval. No need to wait 6 months. Social Security refers it as a TERI case. I did mine over the phone. Do not apply online because TERI cases get lost online. Apply in person or by phone.

 

[Mathew]

Thank you all so much for your advice ! You are all very helpful! I do have a appointment with PT the 22nd of jan.. And I will definitely look in to the Terri case for SSDI . Again much appreciation !'
I read in these forums once, "the only way to get through it is to get through it" very wise message and one I'm taking to heart !

 

[affected]

Welcome Matthew, so sorry you are going through this.

I'm glad you like my signature, don't forget the end of it though - and anything that helps is a blessing!

Pearshoot gives wise advice to start working on yourself now. Try to get a routine going. My PALS just couldn't ever really get any routine going on anything. I don't know if it made his progression faster or not, but I've always suspected that he did many things that sped up progression by doing nothing, then doing way too much. I suspect this because I would watch a week of real progression after something like 4 or 5 hours brush cutting.

This place is a great support, many people with excellent advise and tips they have worked out.

 

[affected]

oops my post went to moderation, should appear soon

 

[Mathew]

Thanks so much Tillie !
People like you and others on this forum are definitely a blessing!