Suggestions for First Neurologist Appointment

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BostonBased

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Hi everyone,

I am a 33 year old male preparing for my first neurologist appointment on September 16. I have read the wonderfully helpful “Getting a Diagnosis” post and have begun preparing the suggested documentation (a record of my symptoms, anything pointing away from ALS, a list of medications, etc.). Beyond the suggestions listed in the sticky, I wanted to inquire about any additional “lessons learned” that would be helpful. Are there other things that folks have found useful to prepare?

Thank you all.

For those interested in my story, here’s how I ended-up on this site.

Like most folks here, I went through a dark period of being convinced I had ALS after my grandfather passed away from PLS and my wife and I learned that she had miscarried one of our twins -- in the same week. After two appointments with my PCP at which he conducted a neurological exam and found no abnormalities, no loss of strength over the past three months, various sensory symptoms, and six weeks of cognitive behavioral therapy, I have become more convinced that my problems are less sinister, perhaps BFS or somatic symptom disorder. That said, my PCP coordinated a neurology appointment because of my fasciculations and obvious concern.

My symptoms started on June 5, one day after my beloved grandfather passed away after a six year battle with PLS. I was by his side when he died and it was tremendously devastating for our whole family. He was an incredible man and like a second father to me. My first symptom was paresthesias in my left leg, followed by stiffness in both legs. The following day, my wife and I learned that she had miscarried one of our twins. This was in the first trimester and not uncommon, but still traumatic for us both. The leg stiffness and paresthesias remained through my grandfather’s funeral on June 8, and was joined by tingling in my left arm and my face. The symptoms came and went for the next week, when I noticed fasciculations in my left calf, followed by fasciculations in my right calf the next week, fasciculations in my feet the week after that, and tongue and eye fasciculations two weeks later. I also encountered soreness in my left arm and hand, little “pop” sensations through my body (mostly shoulders and arms), and a feeling of heaviness in my legs. With my grandfather’s death, the miscarriage, and the fear of ALS, I fell into a depression and lost about 10 pounds over several weeks (most of which I have gained back, thankfully).

The fasciculations are now less frequent and I only see them occasionally, with the exception of my tongue twitches that seem to be fairly constant. Currently, my legs seem to have a constant, low-grade ache, especially in my hamstrings, and they tend to tremble when I’m standing still or exerting myself (doing deadlifts, etc.). I will occasionally get weird sensations in my feet, including tingling and a burning feeling my big toe. I have also noticed hand tremors, same in both hands, when my hands are at rest or outstretched.

Also, please know how much I respect those bravely facing this disease and those caring for loved ones. My grandmother never left my grandfather's side for the six years he had PLS and never once complained. Their love and devotion was remarkable.
 
I am very sorry for your losses.

It is good that you are organizing things.

First your primary question is what is wrong with me? Not do I have ALS?

I prepare for appointments by trying to think through various scenarios. If the doctor says x what do you want to know. If they say y, what then?

Appointments go quickly and you don’t want to leave with out at least a plan if not a straight answer. It is helpful to know what is in the doctor’s differential if you haven’t been given an absolute answer. If there are multiple possible answers then how do you narrow it down?

I agree that your answer is almost certainly not going to be ALS. Let us know what it is!
 
I’m sorry to hear about the loss of your grandfather. I’m glad you could be by his side to share your love and support for him and the family. Now you’re on your own healing journey.

If you’re still worried about ALS, you can relax. Not one thing you’ve posted suggests a motor neuron disease. You note lots of sensory symptoms such as soreness, aching, numbness, tingling. Since you’ve read our stickies, you know that sensory symptoms such as these are not part of the presentation of ALS. And twitching is common, nonspecific, and meaningless in the absence of muscle function failure which you have not described. So your odds of having ALS going into that neuro appointment are pretty much zero.

As far as how to prepare for the appointment, make a list of all your symptoms and a timeline. Gather up all your medical records pertaining to this history along with any test results. Then go into the appointment with an open mind and let the neurologist do his or her job.

Meanwhile, spend time with your family and don’t worry about ALS.
 
Hi Nikki and Karen, Thank you both so much for your kind words and excellent advice! I truly appreciate it. I have started putting everything together and will be ready for my appointment on the 16th. I will check back afterward to let you know how it goes.
 
Hi Nikki and Karen,

I just wanted to thank you both, again, for your advice. I had my neurology appointment today at Brigham and Women's in Boston and it went really well. I met with two neurologists for about an hour and a half for a complete history and examination. Everything was normal and they are confident that my symptoms are stress induced and benign. I asked if they thought I should get an EMG, but they said it was unnecessary, which was good enough for me. I'm sure these symptoms will stick with me for a while, but I'm very happy to be able to cross some scary outcomes off the list.

I wish you both the very best.
 
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