Shawna
New member
- Joined
- Nov 7, 2009
- Messages
- 2
- Diagnosis
- 01/2009
- Country
- CA
- State
- Alberta
- City
- Didsbury
Hi
Just logged on for first time. My husband has had ALS symptoms in left hand/arm for on going 3 1/2 years. Showing now in right hand. EMG's prove to show in left and right arm and right leg. Resistence test from neurologist now shows weak in left ankle, but he does not feel this, still feels strong. Throat clearing but no sign of Bulbar. He is diagnosed as ALS at ALS/Neuro Muscular Clinis by same Neurologist that has been eliminating Multifocal Motor Neuropathy, MMN, and other possibilities.
January 09 decided it showed itself in three different areas as ALS.
Here is the thing. Last month his sister attends EMG testing for weak ankle/leg. Weak hands/forearms. And much weakness soft palette of mouth and slight over production of saliva and throat mucas. Same ALS/Neuro Muscular Clinic but different neurologist last month gave her a possible diagnosis of IBM, Inclusion Body Myositosis. Which is a syndrome that mimics ALS in most area's of mobility and EMG testing yet does not end with diaphram and breathing restrictions. He says this is 'not' ALS by showings or test results. But can be diagnosed by muscle biopsy.
She may have to wait for 4 months for this biopsy.
My husband attended asap back to his same Dr and clinic last week to request same biopsy. He also waits now. Dr. says that there is a 7% chance in the clinic of misdiagnosis but says that this is not one.
My question is has anyone out there come across ALS vs IBM misdiagnosis? Or what does anyone EMG's showing ALS but is something else. And what knowledge of IBM.
Is there a chance Neurologist is wrong?
We are also involved with a Dr. who is trying effexor to aid/slow progression. Has anyone knowledge or papers on this?
And how many of you also, like my husband have extremely below normal levels of Vitamin D and testestrone.
Thanks, Shawna
Just logged on for first time. My husband has had ALS symptoms in left hand/arm for on going 3 1/2 years. Showing now in right hand. EMG's prove to show in left and right arm and right leg. Resistence test from neurologist now shows weak in left ankle, but he does not feel this, still feels strong. Throat clearing but no sign of Bulbar. He is diagnosed as ALS at ALS/Neuro Muscular Clinis by same Neurologist that has been eliminating Multifocal Motor Neuropathy, MMN, and other possibilities.
January 09 decided it showed itself in three different areas as ALS.
Here is the thing. Last month his sister attends EMG testing for weak ankle/leg. Weak hands/forearms. And much weakness soft palette of mouth and slight over production of saliva and throat mucas. Same ALS/Neuro Muscular Clinic but different neurologist last month gave her a possible diagnosis of IBM, Inclusion Body Myositosis. Which is a syndrome that mimics ALS in most area's of mobility and EMG testing yet does not end with diaphram and breathing restrictions. He says this is 'not' ALS by showings or test results. But can be diagnosed by muscle biopsy.
She may have to wait for 4 months for this biopsy.
My husband attended asap back to his same Dr and clinic last week to request same biopsy. He also waits now. Dr. says that there is a 7% chance in the clinic of misdiagnosis but says that this is not one.
My question is has anyone out there come across ALS vs IBM misdiagnosis? Or what does anyone EMG's showing ALS but is something else. And what knowledge of IBM.
Is there a chance Neurologist is wrong?
We are also involved with a Dr. who is trying effexor to aid/slow progression. Has anyone knowledge or papers on this?
And how many of you also, like my husband have extremely below normal levels of Vitamin D and testestrone.
Thanks, Shawna
