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Jaded-1

Active member
Joined
May 2, 2009
Messages
31
Reason
Learn about ALS
Diagnosis
05/2009
Country
US
State
IL
City
Chicago
I am scheduled for my second opinion at the ALS clinic at the Univ of Chicago tomorrow....

Anyone have some encouraging words (especially anyone misdiagnosed after consult and emg from a MND neuro). I have already had my CK and full rheuma/endocrin workups. (2 different labs as well since I switched care midstream after I hit 40 lbs weight loss and felt every test confused my rheumatologist more)


Also... What questions should I ask? Did anyone leave a clinic saying.. I wish I would have asked....


And... any good tips or funny story on how do I deal with the denial? I am getting worse and have convinced myself they are wrong. My endocrinologist told me I have to stop dwelling on the diagnosed and move onto treatment options and I have no clue how to transition.
 
Jaded,

I just wanted to wish you luck tomorrow, hopefully the nuero is wrong. They might want to do there own Emg and repeat some of the test.
There where some misdiagnosed on here. In the search button on the top type in misdiagnosed and see what you can find.
Being in denial is a normal thing, it takes time to get through all the emotions that you and your family will go through. Your endo seems alittle insensitive to tell you to stop dwelling on the diagnosed did you ask him how he would feel......
 
my endocrin is a tough, very direct doctor. The only time she has seemed warm and compassionate was when she called me to let me know she spoke to my neuro over the weekend.... There point the EMG was conclusive with als and the clinical evaluation was consistent with 2 neuros. I finally read my diagnosed.. Respiratory onset ALS. I keep telling myself I am too healthy and this is just normal for me.
 
Respiratory onset ALS is very rare. ARE you having trouble breathing? I don't remember all of your posts. Did you have all the special breathing tests?
 
Jaded,

A few questions I would be asking are:

"What makes you so sure this is ALS?"

"Why couldn't it be anything else?"

"On a scale of 1 - 10, what is your confidence level of this diagnosis?"

Zaphoon
 
I have had trouble breathing. At my last belt testing right before new years eve I could not catch my breath from jumping jacks. I am in good shape and had never had an issue like that before. I have always had very good cardio/breathing.. even during intense circuit training I would very seldom lose my breath for more than a couple of seconds.

I also do find myself feeling "breathless" more lately. I can really notice it when I am going up the stairs as I am getting slighlty dizzy if I do it quickly. I dismissed it as anxiety as it would be normal to feel anxious with this diagnosed. My neuro suspects the weight loss is due to my body is working harder to breathe and its taking more calories. My endocrinologist was investigating me for ortho intolerance due to I would get dizzy if I stood and took a step. Then we discovered my diastolic bp goes up 40+ pts if I stand for an hour and my pulse pressure drops under 20.

I do find the resp onset ironic as I was an agent orange baby and my lungs/chest were the issue. I could not breath adequately and kept pneumonias.

on regards to your post........
I am not a doctor or ever had ALS and not sure how I am supposed to feel. I had never really even considered this until I got sick of the cramping and went to my neuro for some meds. I know my doctors have tested everything trying to get to weight loss and atrophy. I have had ct scans from head to arse, mris from lumbar to brain, heavy metal screening, rhemua screening, endocrine systems screening, as well as urine. I have had 2 neuros say they suspected mnd from the clinical and my emg was performed by a MND doctor with a fellowship showed.... fib/psw, muap amp and duration, reduced muscle recruitment with normal ncv/hreflex on both arms, legs, and tongue. My reflexes were very brisk 2+ on my arms and legs, normal elsewhere. Any doctors want to offer their non binding opinions.. hehe.

I feel I am 10 hours from a perm expiration date. I feel comfortable with Dr Roos and I even emailed dr Rothstein at hopkins and he said roos is a fine mnd neuro and capable of an accurate second opinion. I just hope I have 2 odd things.... something that can explain my arms and legs... then something that can explain my tongue...


had anyone not had the emg redone? I want it redone even if they clinically agree with the diagnosed.
 
Make sure you get your doctor, or nurses email addy. You will have questions later. Its really convenient to communicate via email, for you, and them.
 
Jaded 1

How did it go today at the university of chicago?
 
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