It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Amyotrophic Lateral Sclerosis (ALS) Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 02-28-2013, 07:08 PM   #1
Newbie
(female)
 
Join Date: Feb 2013
Location: Portland, Oregon USA
Posts: 9
ColorPink HB User
Red face I Refused ALS diagnoses now I'm no where...

I had my EMG/NCT done and was seen by 2 new neurologist back to back. I am very happy that I do not have ALS!! I am lost to where I go now. I was diagnosed by a neurosurgeon and a primary care doc with ALS because of MRI and symptoms prior to EMG and was not going to accept the diagnoses so I went for a second opinion. Now I am completely lost. I was praying for an easy fix. (Anything but ALS is great! Now its a mystery) Neuro 1 said I may have a syndrome that hasn't been discovered. Neuro 2 says my brain isn't sending messages to my body. Both say I have gait abnormalities,weakness and both sent me to physical therapy which I scheduled immediately because I can no longer walk without a walking devise. I also have to go get a swallow test-speech therapy??(say what) They also suggested to go see a therapist to cope. I have not had a blood or urine test since the symptoms struck about 5 months ago and since then I have a drop foot and can't use left hand either. The doctors say that there is no pill or surgery to fix me. I asked if they needed to do more tests and they just frowned at me and said "we are sorry, there is no need for these tests." I was told that the physical therapist will either give me brace systems, see me once, or many times. Can anyone tell me what's going on? Do they just think I am nuts because I refused to accept ALS and am I now possibly considered a difficult patient? I am so lost.



Thank you for reading. Be harsh if you must! I am willing to take any opinions, thoughts, or suggestions...good, bad, or ugly.:-)

Last edited by ColorPink; 03-14-2013 at 01:19 AM. Reason: Grammar

 
Reply With Quote
The following user gives a hug of support to ColorPink:
lasida (03-31-2013)
Sponsors Lightbulb
   
Old 03-18-2013, 06:57 AM   #2
Junior Member
(male)
 
Join Date: Mar 2013
Location: Myrtle Beach
Posts: 10
bubba967 HB User
Re: I Refused ALS diagnoses now I'm no where...

I to have gait and balance problems. It started with transient dizziness while driving, not its full blown "fun house feeling" floor moving when I walk. I have been to NUMEROUS neuros and yet to have a diagnosis. I have sveral other symptoms as well. I did do one thing that helped myself dramatically, I changed my attitude. I live life everyday as if its a gift and keep a positive attitude. I may never get cured but I look at it differently. I can offer you this, Johns Hopkins has some very good neuros there, maybe a visit could help you. Good luck and keep your head up!

 
Reply With Quote
Old 03-19-2013, 07:41 PM   #3
Newbie
(female)
 
Join Date: Mar 2013
Posts: 3
Pgoddess HB User
Re: I Refused ALS diagnoses now I'm no where...

I would get tested for Lyme Disease. The most reliable place to test is Igenex in CA. What were the symptoms you had in the beginning?

 
Reply With Quote
Old 03-19-2013, 09:01 PM   #4
Newbie
(female)
 
Join Date: Feb 2013
Location: Portland, Oregon USA
Posts: 9
ColorPink HB User
Re: I Refused ALS diagnoses now I'm no where...

My physician ran a complete blood panel March 2012 when symptoms were just of severe foot cramping,leg fasculations, and swallowing difficulties. I was negative for Lyme's and some others checked for. We were also looking at my CA-125 (cancer) levels which were only elevated a tiny bit. I battled uterine cancer in 2009. I'm now using a walker, unable to write, down to 90 pounds. My primary doc suggested the MND specialist and to go to a Mayo clinic in Arizona. I took the local approach first because of travel expenses.

 
Reply With Quote
Old 03-23-2013, 10:48 AM   #5
Senior Member
(female)
 
Join Date: Jul 2010
Posts: 239
NJLinda HB UserNJLinda HB UserNJLinda HB UserNJLinda HB User
Re: I Refused ALS diagnoses now I'm no where...

Keeping you in my prayers colorpink. You really need to get to the bottom of your illness, whatever it may be. Your posting sounds like you have declined from the last time we spoke. Please get checked out again soon.

 
Reply With Quote
Old 11-09-2013, 07:50 PM   #6
Newbie
(female)
 
Join Date: Nov 2013
Location: Washington state
Posts: 1
cdilley HB User
Re: I Refused ALS diagnoses now I'm no where...

Quote:
Originally Posted by ColorPink View Post
I had my EMG/NCT done and was seen by 2 new neurologist back to back. I am very happy that I do not have ALS!! I am lost to where I go now. I was diagnosed by a neurosurgeon and a primary care doc with ALS because of MRI and symptoms prior to EMG and was not going to accept the diagnoses so I went for a second opinion. Now I am completely lost. I was praying for an easy fix. (Anything but ALS is great! Now its a mystery) Neuro 1 said I may have a syndrome that hasn't been discovered. Neuro 2 says my brain isn't sending messages to my body. Both say I have gait abnormalities,weakness and both sent me to physical therapy which I scheduled immediately because I can no longer walk without a walking devise. I also have to go get a swallow test-speech therapy??(say what) They also suggested to go see a therapist to cope. I have not had a blood or urine test since the symptoms struck about 5 months ago and since then I have a drop foot and can't use left hand either. The doctors say that there is no pill or surgery to fix me. I asked if they needed to do more tests and they just frowned at me and said "we are sorry, there is no need for these tests." I was told that the physical therapist will either give me brace systems, see me once, or many times. Can anyone tell me what's going on? Do they just think I am nuts because I refused to accept ALS and am I now possibly considered a difficult patient? I am so lost.



Thank you for reading. Be harsh if you must! I am willing to take any opinions, thoughts, or suggestions...good, bad, or ugly.:-)
Hello so my husband was diagnosed with als about 6 months ago. we had been seeing doctors for an apparent balance issue due to an irregular gaited walk. Then came muscle twitching and muscle spasms. He has had all the mri's, c-t scans, x-rays, blood work, urinalysis, and even hair analysis. The hair analysis shows high levels of heavy metal toxicity. At first the doctors said he had a narrowing of the spinal canal. They didn't think this was extensive enough to produce the severe symptoms he has so they dwelled on...so then it was MS and that was disproven by the proper testing. Now since he had the EMG the doctor labeled him with ALS just because he was getting confusing or delayed messages to his nerves. So we went through the whole roller coaster ride of accepting the disease they had labeled him with, now that we have had time to deal with the heart breaking news of the doctor telling him to go home and get his affairs together because he has 1-3 years at best. We are now ready and have been looking back through all the medical reports and translations of the tests. We found the fact that he has narrowing of the spinal cord in cervical, thorasic, and lumbar narrowing. We also found in our digging that narrowing of the spinal canal can cause the symptoms of numbness tingling muscle twitching, trouble walking and in the lumbar and thorasic can cause also loss of bladder and bowel function. So are doctors so synical that they cant imagine that it could just be the narrowing of the spinal canal and not als. We also know that his sister has had surgery to correct the narrowing of the spinal canal and just found out that his cousin is having the same procedure done but with a ruptured disk and a tear. We are ready to go back and get a third opinion at this point. I don't understand why they wouldn't at least try the surgery since there is really no test that says ALS is the diagnosis because it is just a guess from the tests and symptoms on the part of the doctors. So instead of giving you hope they send you home with no hope and a label and date of death. I say a prayer for everyone out their right now that may or may not be wrongfully diagnosed with ALS and is dealing with everything that we have. If you have any input it would be greatly appreciated.

From a Very frustrated and scared wife!
cdilley

 
Reply With Quote
Reply Reply




Thread Tools

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 Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 01:17 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!