Is spinal tap really necessary

[Saubier]

CCOX,

I refused the spinal tap because the neuro was quite sure I had ALS. The tap would be grasping at straws. I said go ahead and treat me for what you think the tap might show, and if I don't get better we know it wasn't that.

Pappy

 

[patricia1]

Spinal tap

Glad you feel better What is a blood patch When I had my spinal tap I investigated the doctor to see how many he did.It should be done by a radiologist Sorry you had someone practice on you Take care feel better pat

 

[saska]

Hi Annmarie, I'm sorry to read you're one step closer to ALS . Best wishes, Sharon

 

[brooksea]

annmarie,

unbelievable that you had to be a guinea pig for a resident! Pretty scary!

Sorry youare having difficulties.

CJ

 

[Icanmanz]

Hi, annmarie, I just joined this forum a little bit ago. I wish I had joined it sooner, but I was busy with my son's illness. My son had ALS. I just lost him on June 3, 2007. Let me tell you, it was a very, very sad experience. My son was 38 when he passed, he was 15 days shy of his 39th birthday. Have you been diagnosed with ALS? I still feel like my son is just away, and feel like I'll be seeing him coming home! I will be praying for you. We live in Houston, Texas. Hope I'll be hearing from you. God bless!

 

[CindyM]

Hello Icanmanz. Welcome to our fourm. I am sorry to hear about your son. A parent'sworse nightmare to outlive their offspring! There are many CALS (persons who are caring for or did take care of someone who has ALS) on this forum and everyone is more than willing to share experiences. Did your son have children? How is the rest of the famiy doing? Write and tell us more when you feel like it! Cindy

 

[brooksea]

Hi annmarie,

Physically my husband is doing quite well. We went to the clinic Friday. They consider him somewhat stable. A little more problems with speech and swallowing/drooling. And he can't lift his left thumb. His energy level is way down. But having been diagnosed for almost a year I am thankful his progression hasn't been faster. Mentally he is suffering because his company has dragged their feet about disability and we are living on savings. It is terrible that PAls have to go thru the disease process not knowing what may not work when they wake up in the morning - but to have to deal with people that are so insensitive and have no inkling of ALS is torture. But we will survive.
(and yes his profile is on patients like me - you were right- that's him)
...

Ican,

Terribly sorry you lost your son. Did he have kids? We have a 6 year old. My husband and I are both from Texas.

CJ

 

[patricia1]

Hi annmarie,

Physically my husband is doing quite well. We went to the clinic Friday. They consider him somewhat stable. A little more problems with speech and swallowing/drooling. And he can't lift his left thumb. His energy level is way down. But having been diagnosed for almost a year I am thankful his progression hasn't been faster. Mentally he is suffering because his company has dragged their feet about disability and we are living on savings. It is terrible that PAls have to go thru the disease process not knowing what may not work when they wake up in the morning - but to have to deal with people that are so insensitive and have no inkling of ALS is torture. But we will survive.
(and yes his profile is on patients like me - you were right- that's him)
...

Ican,

Terribly sorry you lost your son. Did he have kids? We have a 6 year old. My husband and I are both from Texas.

CJ

Disability should have paid in one month with a diagnosed of ALS make sure he get all back disability they didnt pay Get a disability lawyer if you have to I hate when people are taken advantage of.God bless pat.

 

[Icanmanz]

Hello Icanmanz. Welcome to our fourm. I am sorry to hear about your son. A parent'sworse nightmare to outlive their offspring! There are many CALS (persons who are caring for or did take care of someone who has ALS) on this forum and everyone is more than willing to share experiences. Did your son have children? How is the rest of the famiy doing? Write and tell us more when you feel like it! Cindy

Hi Cindy, thanks for replying. You asked me if my son had children, yes. His youngest is 7, and the oldest is a girl, 18 yrs old. I wish I had found this forum when my son's obit was still up, but they removed it on July 7th. He was a very handsome young man. My son was so special to me, and still is. I still have another son, he is 36 yrs old. My son that is still living named Shannon, he took it pretty hard when his brother passed. We all did, but we also knew that he wasn't going to suffer anymore! I only know is that my baby is in Heaven with his Heavely Father. I still miss him. It was one of God's plans and I have to respect that. Cindy who has als in your family, and where do you live? We live in Houston.

 

[brooksea]

Thanks Pat and annmarie. As of Friday he was approved, but we have another issue about his pay, blah blah blah. Really sick of it.

Fortunately there is a group in Atlanta that provides free legal service to the poor and disabled. I've already spoken to an attorney there, as recommended by Emory. He said if we take them to court, it could be two years before it was heard and most likely they would end up doing the right thing and the judge would dismiss the case and the fines against the company. And we live in America...where's the justice?

Sorry a little down.

cj

 

[Icanmanz]

Hi annmarie,

Physically my husband is doing quite well. We went to the clinic Friday. They consider him somewhat stable. A little more problems with speech and swallowing/drooling. And he can't lift his left thumb. His energy level is way down. But having been diagnosed for almost a year I am thankful his progression hasn't been faster. Mentally he is suffering because his company has dragged their feet about disability and we are living on savings. It is terrible that PAls have to go thru the disease process not knowing what may not work when they wake up in the morning - but to have to deal with people that are so insensitive and have no inkling of ALS is torture. But we will survive.
(and yes his profile is on patients like me - you were right- that's him)
...

Ican,

Terribly sorry you lost your son. Did he have kids? We have a 6 year old. My husband and I are both from Texas.

CJ

Thank you jimercat! So sorry to hear about your husband. May God bless you guys. My son was diagnosed on March 29, 2006, bless his soul, 15 months later he was gone. I really thought that he was going to be with us longer at least another 6 mos to a year, but his death sneaked up on us, and it almost killed me, because I was not expecting it then. My angel died at home, on a Sunday (june 3, 2007) at 5:50 pm. Part of me died when he passed. I never, in my wildest dream I thought that I was going to watch one of my children die! There is so much to say, but I really do not know where to begin. All I can say is may God bless you folks! What part of Texas are you from?

 

[brooksea]

Hello Ican,

My husband was born in El Campo and lived in Bowie until his parents moved to Georgia. I am an Air Force Brat born in Witchata Falls. My Dad retired to Georgia.

That is really rough, I'm so sorry you lost your son so soon after diagnosis. I feel real fortunate my husband has done as well as he has. It's just so unpredictable.

My thoughts are with you.

CJ

 

[Icanmanz]

Hello Ican,

My husband was born in El Campo and lived in Bowie until his parents moved to Georgia. I am an Air Force Brat born in Witchata Falls. My Dad retired to Georgia.

That is really rough, I'm so sorry you lost your son so soon after diagnosis. I feel real fortunate my husband has done as well as he has. It's just so unpredictable.

My thoughts are with you.

CJ

Wow, jimercat, El Campo! Small world! We are a stone's throw from El Campo, plus I have cousins in El Campo, they have been there for years and years. Your husband probably knows them. Ask him if the family name Cantu rings the bell. I have a cousin that lived there, he was a great runner in school, and still is. He moved to Sugarland. He still competes in these marathons. Wow again, small world! Hope I hear from you again!

 

[brooksea]

Ican - will check with the in-laws, as husband was quite young when they moved.

CJ

 

[Icanmanz]

Ican - will check with the in-laws, as husband was quite young when they moved.

CJ

Okay, jimercat. My cousin's name is Ino Cantu, he was one of the greatest runners, and still is. He had a brother that was a good runner too, I believe it was Eddie ir Freddie Cantu. The Cantus were a big family, their dad's name was Manuel. Let me know.

I am signing off for a while, my stomach is growling! Lol! God bless. Did I read earlier that you guys have a website? Just wondering! I wanted one for my son in his memory, but unfortunately, I am not too computer savvy! Lol! I am lucky I was able to learn this much on my own. I did not even know how to turn it on when I first bought it.LOL Pure determination!

Bye! God bless!