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Marcus44

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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.
 

Tokahfang

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Hi, Marcus

If she'd had an EMG, and not been pushed towards an ALS clinic or at least a movement-disorder specialist, I think it would be safe to assume that her EMG didn't scream "ALS!" at the person who did it. Did the EMG take place in relevant parts of her body (her throat/tongue)? If she has such noticeable symptoms there, and they EMGed it, they would know if she was a candidate. If her EMG wasn't anywhere near there and it didn't suggest any other conditions, then it doesn't really tell you anything.

Thinking about it, though, even if she had ALS, that still wouldn't explain many of her symptoms. So I would not spend time worrying about ALS unless a doctor brings it up.

Honestly, your wife is in a tough spot. She could have a lot of little to normal problems that are stacking up badly together, or she could have some kind of underlying pathology that is hard to find. I think she's on a long road to get it all worked out. In the meantime, I would encourage her to seek symptomatic relief and help with the parts of things that disable her. Trouble swallowing and weight loss go hand in hand, can they help her with that?
 

Marcus44

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If she'd had an EMG, and not been pushed towards an ALS clinic or at least a movement-disorder specialist, I think it would be safe to assume that her EMG didn't scream "ALS!" at the person who did it. Did the EMG take place in relevant parts of her body (her throat/tongue)? If she has such noticeable symptoms there, and they EMGed it, they would know if she was a candidate. If her EMG wasn't anywhere near there and it didn't suggest any other conditions, then it doesn't really tell you anything.

She was sent to a MS client and the preliminary response was "no MS" but she does have a follow up with them in the near future and I will update what they say. I'm also going to try to get my hands on the EMG results in the future if possible.


I hate to say it but I was kidda hoping for a diagnosis of MS after all I have read about nero disorders over the past couple of months.
 

R9L13026

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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.

Your fears are founded! Since you've been reading up on ALS you know there is no positive test. Researchers are still puzzled about the pathways on getting and identifying those that have it.

Yes you need to ask the d oc what the EMG/NVC results show, but my first two neurologists wouldn't tell me much except that they had seen some issues they were unsure of.

Clearly your wife has something wrong, hope its not ALS. Lack of sleep can cause a lot of problems. Get your D oc to do something about that also meds for the small fiber(maybe this is good news?)
 

Marcus44

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Your fears are founded! Since you've been reading up on ALS you know there is no positive test. Researchers are still puzzled about the pathways on getting and identifying those that have it.

Yes you need to ask the d oc what the EMG/NVC results show, but my first two neurologists wouldn't tell me much except that they had seen some issues they were unsure of.

Clearly your wife has something wrong, hope its not ALS. Lack of sleep can cause a lot of problems. Get your D oc to do something about that also meds for the small fiber(maybe this is good news?)


Thanks for the response, I have to be honest that I was hoping a bunch of peeps jumped in and said "This isn't ALS" like so many other threads on here. :cry::cry: I guess I'm just going to have to be patient and let the professional do their work. Thankfully there are a couple of appt. that are coming up in the next couple of weeks.


She is taking gabapentin for the small fiber with mixed results.


I'm pretty sure when I start asking questions about the EMG/NVC results it will go right over my wife's head but the doctors will know exactly what I'm asking.
 

Marcus44

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My wife was at the MS doctors last week and they ruled out MS. Next neurologist visit next month. I'm still holding out hope that this isn't ALS but in the same sense I would like some answers.
 

lgelb

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Marcus, this all seems unnecessarily murky. Your wife shouldn't have to go to a lot of neuro subspecialists with the info you imply she has in hand. You two should head to the Penn State ALS Center @ Hershey with all the complete reports to date -- and everyone reading this should have all diagnosed test reports in hand, not rely on the coordination of overworked staff -- she should get an exam and at least a much narrower differential diagnosis than you seem to have. These things are not that diffuse. A brain MRI is going to show lesions in active MS; an EMG in any NMD like ALS is going to show active and chronic denervation. And so on. If she is progressing as rapidly as you imply and has ALS, she is going to want to be followed and receive support/equipment rx from Hershey anyway. The slow progression of the diagnostic process here makes me wonder if everyone is getting all the reports. It would hardly be unusual if they hadn't. Not everyone is digital/efficient.
Just skimming the sx list, has MG been ruled out?
At any rate, before you go anywhere else, I would compile a folder of the neuro record to date so you are not spinning your wheels more than you need to. Also, keep in mind that incidental findings such as insignificant cysts can unduly prolong the process if docs think you or she are fixated on them. I'm not saying you are, just that when you have all the rpts together and have highlighted (literally) any abnormalities, it's a lot easier to walk through these specific findings with any doc she sees.
 

lgelb

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As usual the Forum's "spell checker" has mangled "d i a g n o s t i c test" (tests for the purpose of making a diagnosis) into "diagnosis test." Maybe I can trick it through spacing. That was kind of an important phrase... blood work, imaging, EMGs, NCVs, muscle bx, all that should be in your folder.
 

Marcus44

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Marcus, this all seems unnecessarily murky. Your wife shouldn't have to go to a lot of neuro subspecialists with the info you imply she has in hand. You two should head to the Penn State ALS Center @ Hershey with all the complete reports to date -- and everyone reading this should have all diagnosed test reports in hand, not rely on the coordination of overworked staff -- she should get an exam and at least a much narrower differential diagnosis than you seem to have. These things are not that diffuse. A brain MRI is going to show lesions in active MS; an EMG in any NMD like ALS is going to show active and chronic denervation. And so on. If she is progressing as rapidly as you imply and has ALS, she is going to want to be followed and receive support/equipment rx from Hershey anyway. The slow progression of the diagnostic process here makes me wonder if everyone is getting all the reports. It would hardly be unusual if they hadn't. Not everyone is digital/efficient.
Just skimming the sx list, has MG been ruled out?
At any rate, before you go anywhere else, I would compile a folder of the neuro record to date so you are not spinning your wheels more than you need to. Also, keep in mind that incidental findings such as insignificant cysts can unduly prolong the process if docs think you or she are fixated on them. I'm not saying you are, just that when you have all the rpts together and have highlighted (literally) any abnormalities, it's a lot easier to walk through these specific findings with any doc she sees.



Thanks for the tips. I did just quickly look up Myasthenia Gravis and I don't believe that this has been ruled out yet.

Believe it or not she is going to Hershey for the past 9 month to a year but she has not been sent to the ALS clinic yet. TBH we are not really fixated on anything at this time and would just like to get some answers sooner or later.
 

dalvin

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Marcus, this all seems unnecessarily murky. Your wife shouldn't have to go to a lot of neuro subspecialists with the info you imply she has in hand. You two should head to the Penn State ALS Center @ Hershey with all the complete reports to date -- and everyone reading this should have all diagnosed test reports in hand, not rely on the coordination of overworked staff -- she should get an exam and at least a much narrower differential diagnosis than you seem to have. These things are not that diffuse. A brain MRI is going to show lesions in active MS; an EMG in any NMD like ALS is going to show active and chronic denervation. And so on. If she is progressing as rapidly as you imply and has ALS, she is going to want to be followed and receive support/equipment rx from Hershey anyway. The slow progression of the diagnostic process here makes me wonder if everyone is getting all the reports. It would hardly be unusual if they hadn't. Not everyone is digital/efficient.
Just skimming the sx list, has MG been ruled out?
At any rate, before you go anywhere else, I would compile a folder of the neuro record to date so you are not spinning your wheels more than you need to. Also, keep in mind that incidental findings such as insignificant cysts can unduly prolong the process if docs think you or she are fixated on them. I'm not saying you are, just that when you have all the rpts together and have highlighted (literally) any abnormalities, it's a lot easier to walk through these specific findings with any doc she sees.
not all mnd's show up on an emg . the umns are in the brain stem and cant be checked
 
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