Apprehensive

[Straightshooter2]

snubbyfan, our prayers are with you. My wife is past-President of the North Florida Muscular Dystrophy Executive Board. She's not sure if MMN is one of the neuro-muscular diseases they cover but since it's in the ALS type which is covered, she said to contact your local Muscular Dystrophy chapter. They offer support groups and such which might be of help for you and your wife. Also, I don't know how far away it is but MDA does have an adult clinic located in the Airing Center for Neurology at the University of Cincinnati Medical Center. You can contact MDA National at (800) 572-1717 to find your nearest chapter. MDA doesnt' do as much as they used to on the patient side but they still do some assistance with needed medical equipment from what I understand.

CW

 

[dcxplant]

...no words. Prayer sent.

 

[mg357]

Snubby fan prayers from illinois

 

[SW_shooter]

snubbyfan, its not useless, you are here for a reason and for someone. Hang in there and keep up the fight. You brighten this Forum with your insight, wit and general good natured responses.

David

 

[Oddball]

A prayer sent for you and your wife. Never give up.

 

[monet61]

Our thoughts are certainly with you and yours.

 

[Rgoodwin]

Prayers said. God Bless

 

[Rintimtin]

Prayers sent. Don't give up.

 

[ladder13]

May God and His Blessings be with you in the coming days.

 

[radar1972]

Snub,
Prayers sent on behalf of you and your wife. Keep moving closer to God.

 

[snubbyfan]

Thanks everyone for taking the time to comment. I generally try not to complain and keep positive but sometimes it just gets to be a bit much.
BamaBrad, I'm glad to hear the operation went well. From what I've read Lupus is very unpleasant with skin conditions and antiphospholipid syndrome causing blood clots as a secondary condition. I wish you well, keep up the fight.
I've actually gotten 3 opinions, including Rose Memorial Hospital at West Virginia University in Morgantown. In fact the Neuromuscular specialist there was the most brutal, I mean thorough, with the cattleprod and electrified needles. When I left there I was actually bruised and bleeding but he got the definitive diagnosis and he prescribed the IVIG treatments.
From what I've read about ALS, MMN seems like a minor inconvenience. I'm on an ALS/MMN forum but I gotta say that I'll only use it for information. There're so many that are so much worse off than me and there's nothing I can do to help. Some whose families get angry at them for being a burden. Some people really suck.
I'm blessed with a wonderful wife. She actually got the insurance company to approve my treatments when they initially denied them, so my wife called the Department of Labor and not only did the insurance company get fined but they had my treatments approved the next day.
I'm not ready to give up hope and with all this positive energy coming my way, things gotta get better.
Again, thanks everyone.

 

[snubbyfan]

After I wrote that original post and the people on this forum responded with prayers and well wishes, we've gotten our taxes back and I'll be able to go to therapy and my insurance company has covered my IVIG treatments through August. Out of the blue my wife gets a call and a job offer to be a home health care aid right here in town so she'll be local and we'll be making enough to cover our bills. After the house gets paid off we'll be able to put a little away. Then when our vehicles are paid off, we'll be able to breathe a little. Even the weather turned nice.
Well I feel like these are a few miracles helped along by the fine people on this forum. I just hope that the others in need of help get their little miracles too.

 

[jgh4445]

Continued prayers for you Sir.

 

[ditrina]

Prayers sent...

 

[MaximumLawman]

I thought there was an organization or business out there that trained family members to take care of their own and then get paid by the insurance companies or government whatever they'd pay for home health care to an LPN or RN or other home care business. That can add up depending on how much in-home care you need.

 

[snubbyfan]

I thought there was an organization or business out there that trained family members to take care of their own and then get paid by the insurance companies or government whatever they'd pay for home health care to an LPN or RN or other home care business. That can add up depending on how much in-home care you need.

The only way my wife could be a home care aid for me and get paid is if we got divorced. Apparently there's been so much fraud that spouses aren't allowed to be paid home care providers. I don't really need that much, she just makes sure that stuff in the house is gimpy Injun accessable.