Diagnosed with ALS and then Undiagnosed with ALS

[Flyflaras]

I was diagnosed with ALS, by a neurologist who typically diagnoses MS. I had a brain MRI, that showed a hallmark sign of ALS. My father had PLS? but he did pass away, within five years of his diagnosis. My family and I believe it was ALS.

My initial neurologist sent me to another neurologist, for further testing, and to have a diagnosis confirmed. The neurologist, after 3 visits, with her Nurse practitioner, said that I show no signs of neurological problems. I was sent to for a bariam swallow test, and they said everything was working, but much slower than they would expect at my age.

I went to my primary doctor, and he suggested that I may have anxiety. He offered to prescribe anti anxiety medicine, and I declined. I have not returned to the neurologist or my primary doctor for about 8 months.

I have symptoms of tongue weakness, twitching,body weakness, ( as the day goes on). I get bouts of weakness in my hands. I can only work a few hours a week, from home, on my computer. I pace my everyday activities. I am confused, as my symptoms seem to be intermitent, except for pain, form fatigue, that occurs when I do too much.

I am unsure what to think. I know something is wrong, but unsure if the initial diagnosis is correct. It's been a couple years, and I am doing less than I was able a couple years ago. Any suggestions what I Should do? I will be looking for a new primary doctor, as I will be moving.

 

[Nikki J]

Did anyone do an emg? Mri findings are not part of the diagnostic criteria. At best it should say requires clinical correlation

If you are moving and know what insurance you will have start looking for a pcp now. Many places have long waits to see a new doctor if you can find one at all. And then you need to ask for another neurological opinion

 

[lgelb]

Strongly agree -- intermittent weakness and waxing/waning with the features you have described, including functional impairment, suggests a possibly treatable disorder, whether systemic or neurological. Now is the time to find out.

When you select a PCP, make sure they are an internist, and preferably within a large community or academic clinic system where you can easily be referred in-house to specialists.

 

[Flyflaras]

I had 2 EMG's. The first one was inconclusive, and I was referred to neurology at a hospital with specialists. The second EMG, the doctor said was normal. At the same time, the brain MRI, there were abnormal findings, in the motor ban. I was diagnosed with ALS. Later, I had another MRI, and they said they no longer saw the abnormality.

The second opinion neurologist said that I did not need to be referred for another EMG, and that she's see me in 3 months. I never saw her again, only her nurse, who said that I have no neurological symptoms that she could see. It would be wonderful if this is something that could be treated, but I don't know what to do next. After I was told by my primary and the neurology nurse that it is perhaps anxiety, I just stopped going... I get tongue weakness sometimes, and other times, for weeks, I don't have it.

I get leg tightness and or burning, for a couple days, for example, and then don't have it for a week or two. Twitching in feet, hands, arms, comes and goes... The only consistent thing is I have pain and fatigue, when I don't pace my activities and rest my body. By the end of the day, I'm pretty much couch bound, or I'm in pain doing things. Do you know if this Is consistent with ALS?

 

[ShiftKicker]

That certainly sounds very confusing. Have you received any reports or EMG results from your doctors? A diagnosis of ALS is not made from an MRI, so it's a bit muddled about what might have been the reasoning for that particular diagnosis if you had a clean EMG.