Old 07-26-2008, 01:08 PM #1 (permalink)
Sammantha's Avatar
Senior Member
 
Join Date: 2007
City: Newport
State: NC
Country: Uni
Interest: I have pseudobulbar palsy and spastic paraplegia
Posts: 505
Sammantha is on a distinguished road
Sammantha Sammantha is offline
Senior Member
Sammantha's Avatar
Join Date: 2007
City: Newport
State: NC
Country: Uni
Interest: I have pseudobulbar palsy and spastic paraplegia
Posts: 505
Sammantha is on a distinguished road
Unhappy Update for friends

I went to my appointment yesterday.... Still no help. Doctor wants me to see his superior (his boss.) I told him i was too tired to keep up with all of this, that if he could not give diagnosis there was no sense in seeing his superior. Doc then asked if i wanted to go to Mayo or Hopkins. I said the same thing, and he discouraged me from not going forth with stopping of appointments. He made an appointment for me with his boss. When i told my mother what happened she looked up info about Mayo and wrote me a letter that i received when i returned home. She said she would pay for air fare and everything and that i should go. She said there is one in Jacksonville Fl. At the appointment my husband asked what concerned him the most and the doc said that i have brisk reflexes and clonus in my left ankle, and inability to release grasp. MY biggest problem is seeing my body change from muscle wasting and getting weaker. My emotions are crazy and my bank account empty. I dont think i can go on another journey with a whole new rounds of tests and what not, i am getting so drained. Physically and emotionally. I wish everyone would just let me go.
Sammantha is offline  
Old 07-26-2008, 01:18 PM #2 (permalink)
rose's Avatar
Extremely Helpful Member
 
Join Date: 2008
City: Anytown
State: Maryland
Country: US
Diagnosed: 7/2008
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 2,892
rose is on a very distinguished roadrose is on a very distinguished road
rose rose is offline
Extremely Helpful Member
rose's Avatar
Join Date: 2008
City: Anytown
State: Maryland
Country: US
Diagnosed: 7/2008
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 2,892
rose is on a very distinguished roadrose is on a very distinguished road
Default

Quote:
Originally Posted by Sammantha View Post
I went to my appointment yesterday.... Still no help. Doctor wants me to see his superior (his boss.) I told him i was too tired to keep up with all of this, that if he could not give diagnosis there was no sense in seeing his superior. Doc then asked if i wanted to go to Mayo or Hopkins. I said the same thing, and he discouraged me from not going forth with stopping of appointments. He made an appointment for me with his boss. When i told my mother what happened she looked up info about Mayo and wrote me a letter that i received when i returned home. She said she would pay for air fare and everything and that i should go. She said there is one in Jacksonville Fl. At the appointment my husband asked what concerned him the most and the doc said that i have brisk reflexes and clonus in my left ankle, and inability to release grasp. MY biggest problem is seeing my body change from muscle wasting and getting weaker. My emotions are crazy and my bank account empty. I dont think i can go on another journey with a whole new rounds of tests and what not, i am getting so drained. Physically and emotionally. I wish everyone would just let me go.
Sammantha, I'm so sorry you didn't get any answers. My heart really goes out to you. I know you were counting on learning something new! And , no, absolutely not, no one wants to just let you go! ~ or should they. Your family needs you so much, and even here on the board, you're such an asset!

What tests did you have? Did you see just the one doctor? ... really, you can't stop now ~ you've finally got your health insurance again. Its a bump in the road, but eventually you're going to get some answers, and this is so important to keep trying, because whatever it is, if it will respond to treatment, the sooner the better. BIG BIG ((hugs))
rose is offline  
Old 07-26-2008, 03:57 PM #3 (permalink)
Senior Member
 
Join Date: 2007
City: N/A
State: idaho
Country: US
Interest: Other
Posts: 585
vmd is on a distinguished road
vmd vmd is offline
Senior Member
Join Date: 2007
City: N/A
State: idaho
Country: US
Interest: Other
Posts: 585
vmd is on a distinguished road
Default

I echo rose's sentiment. We all have a purpose on this earth, to love God and one another.
vmd is offline  
Old 07-26-2008, 04:59 PM #4 (permalink)
Very Helpful Member
 
Join Date: 2007
City: philadelphia
State: pennsylvania
Country: united states
Interest: I am interested in learning about ALS/MND.
Posts: 1,232
crystalkk is on a distinguished road
crystalkk crystalkk is offline
Very Helpful Member
Join Date: 2007
City: philadelphia
State: pennsylvania
Country: united states
Interest: I am interested in learning about ALS/MND.
Posts: 1,232
crystalkk is on a distinguished road
Default

Sam,

I am sooooooo sorry and know where you are coming from its very frustating. If your mom is offering to pay why don't you go. I'm sure she can't stand to see you suffer with frustration anymore either. Even though we are grown our parents worry about us the way we worry about are little children. When did your nuero make the appointment with his boss for? I always admire how strong you are with how much you have on your plate. Please hang in there your family needs you.
crystalkk is offline  
Old 07-28-2008, 09:22 AM #5 (permalink)
awieleba's Avatar
Very Helpful Member
 
Join Date: 2008
City: oakland twp
State: michigan
Country: US
Interest: seeing neuromuscular specialist for my issue's
Posts: 1,067
awieleba is on a distinguished road
awieleba awieleba is offline
Very Helpful Member
awieleba's Avatar
Join Date: 2008
City: oakland twp
State: michigan
Country: US
Interest: seeing neuromuscular specialist for my issue's
Posts: 1,067
awieleba is on a distinguished road
Default

Sam,

I just feel for you sooo much. It is so frustrating to not have answers. I would take your mom's offer and go to Mayo. I will pray for peace for you and your family!

Take care,

april
awieleba is offline  
Closed Thread

Tags
ability, ankle, clonus, diagnosis, friend, info, muscle, muscle wasting, problem, tests, update, wanted


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
My 5 Friends CGARS People With ALS - "PALS" 8 12-26-2015 05:03 PM
Pen Friends Veraann General Discussions About PBP 6 10-11-2011 09:51 AM
to all my friends JeffP People With ALS - "PALS" 17 03-11-2010 11:04 PM
Friends MaxwellMurder People With ALS - "PALS" 2 02-24-2010 07:21 PM
friends? rocmg Current Caregivers (CALS) 12 12-17-2009 09:02 PM
Hello friends, I am still around :) jonsjr40 People With ALS - "PALS" 5 09-24-2009 10:20 AM
Update for friends Sammantha General Discussion About ALS/MND 14 11-19-2008 09:07 AM
Hey Friends, Help BoxersRule Do I Have ALS? Is This ALS? 1 06-08-2008 03:16 PM
Hello friends me General Discussion About ALS/MND 4 01-14-2006 06:57 PM


All times are GMT -5. The time now is 07:58 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016