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Ram1

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Joined
Aug 11, 2019
Messages
3
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CO
City
Denver
Thank you for any input. Wife late 40s
Normal emg 1 year ago. Progression includes atrophy of hands shoulders spasticity and hyper reflexia and worsening twitching. Twitching worse while asleep but also in day. Fatigue and weight loss. Mood very erratic. Strength ok. Posture worsening. Neurologist says 4 years to rule out mnd. Neurologist concerned about spasticity disorder. I am trying my best and at times denial a big issue as we both want this to just go away. My therapist told me to post something so I am. I am so sorry for those of you or your loved ones that have confirmed mnd. My heart goes out to you. Diagnosis seems so challenging and complicated. Any suggestions welcome.
 
I'm sorry to hear about your wife, Ram. We would always suggest a second opinion with a neurologist at a neuromuscular center. It sounds like your neurologist may suspect PLS/UMND ALS, but with a provisional diagnosis, she should have full access to appropriate benefits and treatment. However, the second opinion would be to rule out other disorders that should be considered.

If you want to share any chart notes or her EMG, we could be more helpful, but in any case I would definitely pursue another opinion.

Best,
Laurie
 
Thank you for response. Her symptoms of back and shoulder weakness have progressed and we are working on options to claim disability for her. Is it common for mnd in some individuals to progress slowly complicating making a confirmed diagnosis? It seems like pls and mnd is difficult to diagnose and delays access to potential treatment and life planning and claims for insurance benefits. We are greatful whatever variant she is dealing with us progressing slow and her strength in legs and arms is ok. Hands neck and shoulders are primary issue.

Is there a neurologist or center you recommend? We can go anywhere
 
Since it does not sound like a myopathy or other alternative to MND has been ruled out, the MDA/ALS Center at the University of Colorado in Denver comes to mind.
 
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