General question about other diagnoses.

[JustTrying]

I go tomorrow for my neuro appt and something I've been wondering about. I just don't see how my symptoms could be anything but als.
I've had MRI (noted chiari but I don't have headaches, soooo)
Bloodwork for everything that could mimic ALS
Ct scan
24 hour urine
Endoscopy
Colonoscopy
Throat scope

So my question is, what else could it be? Are there any differential diagnoses even though I have the classic ALS symptoms? I've seen mitochondrial disease mentioned but doesnt that have to start from some illness or be familial?
I'm one to be armed with knowledge so I want to go tomorrow with some familiarity of terms.

Thank you

 

[momap53]

I had EMG/NCV, spinal tap, and muscle Bx, in addition to MRI from brain to tail before diagnosis.

 

[jpier]

I had EMG/NCV, spinal tap, and muscle Bx, in addition to MRI from brain to tail before diagnosis.

Hi,how where the results for the test?,
I'm waiting for diagnose too.thanks

 

[lotusbri]

I'm two years into this mess and I'm still without a diagnosis. Well I've been told its Lyme, but there is just too much controversy to take it that seriously (even though I'm trying treatment). My medical file is as thick as the bible. M taking a break from diagnostics for the time being.

 

[JustTrying]

I've had bloodwork for Lyme, as well as b12, full thyroid, magnesium, etc. etc. etc. in all, I think I've had 20 vials of blood taken through this journey.

I would be thrilled if I got a Lyme diagnosed.

I'm having a hard time finding other diseases this may be, I was wondering if anyone here might have some insight. In other words, what they themselves were tested for in addition to ALS

 

[vickim]

I was tested for lyme, ms diabetes, lupus and I am not sure what else. It took 5 years to get my answer. I am 6 years into this now. Final test was a muscle bx. And with progression there are more tests or repeating them, I have had 3 emgs and scheduled for another in oct. to check on the progression of nerve damage.

There is no one test, it is a process of elimination and combination of tests. Some people it takes a short time and others months and even years. There a several md diseases alone. Only time and patience and going through the process is going to give you an answer. I wish you peace.

 

[Txgirl]

I've had bloodwork for Lyme, as well as b12, full thyroid, magnesium, etc. etc. etc. in all, I think I've had 20 vials of blood taken through this journey.

I would be thrilled if I got a Lyme diagnosed.

I'm having a hard time finding other diseases this may be, I was wondering if anyone here might have some insight. In other words, what they themselves were tested for in addition to ALS

I was tested for Lyme disease, Lupus, Leukemia, RA, Celiac disease, vitamin deficiancy. Those are just to name a few. I also had 2 EMG's and 3 MRI's.

 

[Txgirl]

I forgot to add HIV to that list of tests.

 

[jellis86]

I think they tested me for every human disease that can possibly mimic ALS. Like momap53 I was tested head to foot. HIV, Lupus, myasthenia gravis, thyroid, cancer, MS, etc. These included blood tests, spinal tap, several MRIs and CT scans, Urine for heavy metals, several different Lyme tests, EMG/NVC x2.
Fortunately, or unfortunately depending on your viewpoint, I was diagnosed in just over a years time.

 

[patrick123]

i was diagnosed within 2 months of severe symptoms appearing. i did not have alot of tests just 2 emg's mri 24hr urine and 62 vials of blood. i counted. and i never got one lolly pop.i started out with left side weakness in my arm and leg and severe muscle atrophy within a 10 day time frame . i can only walk a few steps now and have been usinf a pwc since february. we are so different .

patrick

 

[Polar]

My Diag. was confirmed after a Muscle biopsy.. I had numerous other tests over two years but the searching ended with that biopsy..

 

[JustTrying]

My Diag. was confirmed after a Muscle biopsy.. I had numerous other tests over two years but the searching ended with that biopsy..

Did you have an EMG prior to biospy? If so, Did that show anything?

 

[JustTrying]

i was diagnosed within 2 months of severe symptoms appearing. i did not have alot of tests just 2 emg's mri 24hr urine and 62 vials of blood. i counted. and i never got one lolly pop.i started out with left side weakness in my arm and leg and severe muscle atrophy within a 10 day time frame . i can only walk a few steps now and have been usinf a pwc since february. we are so different .

patrick

Did your EMG show anything? Was that how you were diagnosed?

 

[JustTrying]

I think they tested me for every human disease that can possibly mimic ALS. Like momap53 I was tested head to foot. HIV, Lupus, myasthenia gravis, thyroid, cancer, MS, etc. These included blood tests, spinal tap, several MRIs and CT scans, Urine for heavy metals, several different Lyme tests, EMG/NVC x2.
Fortunately, or unfortunately depending on your viewpoint, I was diagnosed in just over a years time.

What was the test that ultimately confirmed ALS? Sorry I am full of questions...

 

[Nikki J]

For my sister the EMG was the diagnostic test. Aside from that and her neuro exam (Hoffman's Babinski deep tendon reflexes) all else was normal. She was told immediately