Marcus44
New member
- Joined
- Sep 20, 2013
- Messages
- 6
- Reason
- Learn about ALS
- Country
- US
- State
- PA
- City
- Scranton
Hello All,
I have been a lurker in these forums for the last couple of months and been holding off on posting here for one reason or another.
Here my story:
My wife has been seeing numerous neurology and other doctors over about the last two years with no real answers to symptoms and/or test results that she has been experiencing. She doesn't know I'm posting here so I'm going to try to give my best list of things she has been experiencing but please realize some of this info should be considered hearsay. I'm hoping for the 99.998 percent chance that she doesn't have ALS/MND.
Here are her symptoms in no particular order and I understand that some of these may or may not be ALS related:
Difficulty swallowing
Change in Voice
Rapid Weight loss
Small Fiber Peripheral Neuropathy
Brain Fog or difficulty coming up with words
Extreme Fatigue (example: she use to stay up until 10-11 p.m. and now she's wiped by 6 p.m. or earlier and is in bed by 8 p.m.
Sexual Dysfunction - wasting vaginal muscle
Difficulty Sleeping
Migraine headaches
Back Pain
Tests given, I'm not sure of most of these results but any input on what questions I should ask would be some great info:
EMG - Not sure of the results
Sweat test - Dirty confirmed small fiber(maybe this is good news?)
back MRI - Cysts found sent to Back Specialize will add on this below
Neck MRI - Not sure of the results
Brain MRI - Not sure of the results
Spinal tap - Neg for Lymes
Many many Glucose test all neg for diabetes
chest x-ray - clean
breathing test - not sure of the results
Doctors:
Mainly she is seeing a Neurologist but He has sent her to a RA specialist to check for sarcoidosis AKA Bernie Mac disease which was unfounded, a MS specialist which was unfounded and a back specialist for cysts. The Back specialist said that the cysts weren't worth operating as they were too small and most likely not causing other symptoms expect for back pain. The back specialize seemed puzzled and said "this is like a hang nail compared to the other things you are experiencing"
My Concern:
Though I have never asked any Dr. the direct question "could this be ALS"? my fear is that they are trying to rule everything out first and are spreading out EMG tests about 6 months to try to get a baseline.
Thanks for any help as there is another nero appt. coming up in the near future.
I have been a lurker in these forums for the last couple of months and been holding off on posting here for one reason or another.
Here my story:
My wife has been seeing numerous neurology and other doctors over about the last two years with no real answers to symptoms and/or test results that she has been experiencing. She doesn't know I'm posting here so I'm going to try to give my best list of things she has been experiencing but please realize some of this info should be considered hearsay. I'm hoping for the 99.998 percent chance that she doesn't have ALS/MND.
Here are her symptoms in no particular order and I understand that some of these may or may not be ALS related:
Difficulty swallowing
Change in Voice
Rapid Weight loss
Small Fiber Peripheral Neuropathy
Brain Fog or difficulty coming up with words
Extreme Fatigue (example: she use to stay up until 10-11 p.m. and now she's wiped by 6 p.m. or earlier and is in bed by 8 p.m.
Sexual Dysfunction - wasting vaginal muscle
Difficulty Sleeping
Migraine headaches
Back Pain
Tests given, I'm not sure of most of these results but any input on what questions I should ask would be some great info:
EMG - Not sure of the results
Sweat test - Dirty confirmed small fiber(maybe this is good news?)
back MRI - Cysts found sent to Back Specialize will add on this below
Neck MRI - Not sure of the results
Brain MRI - Not sure of the results
Spinal tap - Neg for Lymes
Many many Glucose test all neg for diabetes
chest x-ray - clean
breathing test - not sure of the results
Doctors:
Mainly she is seeing a Neurologist but He has sent her to a RA specialist to check for sarcoidosis AKA Bernie Mac disease which was unfounded, a MS specialist which was unfounded and a back specialist for cysts. The Back specialist said that the cysts weren't worth operating as they were too small and most likely not causing other symptoms expect for back pain. The back specialize seemed puzzled and said "this is like a hang nail compared to the other things you are experiencing"
My Concern:
Though I have never asked any Dr. the direct question "could this be ALS"? my fear is that they are trying to rule everything out first and are spreading out EMG tests about 6 months to try to get a baseline.
Thanks for any help as there is another nero appt. coming up in the near future.