Started with concussion, now lots of little symptoms, no Dx yet.

[yaya12]

66 yo female. Not genetic. February, 2024 I was hit by another cyclist, and I sustained a concussion and other injuries. The brain injury caused some "swirly brain," vision changes, vestibular type issues. Did PT/OT, Neuropsych testing, Vision therapy, had to get new glasses. I was released from therapy after three months with little improvement. I continued to have my familiar brain swirl.

Half way through last year, I began experiencing new symptoms that made no sense. I started waking up crying then crying over ridiculous stuff. PCP started me on Prozac for depression (I didn't feel depressed), then I started having weird neurological symptoms, so the Prozac was stopped in case that was the cause. It wasn't. I started experiencing mild dysphagia but blamed it on allergies. I also had some limb weakness but blamed it on deconditioning from not riding enough. My balance issues were suddenly worse.

In early October, two toes on my left foot stopped working. They wouldn't move. At the same time, I was awakened in the middle of the night with an electrical zap to the tip of my tongue. PCP ordered EMG/NCS (finally done 12/30/24). Within two weeks of my left two toes thing, three toes on the left had stopped working and then two on the right, and the left side of my tongue started feeling weird. Since October, I have had progressive weakness in all extremities and torso, and I started to have trouble sleeping.

Fast forward to now. It is late March, 25. I'm using a cane/trekking pole to walk. Several people have asked if I had been drinking. I don't drink. I have increasing difficulty talking (stumbling over my wobbly tongue) and swallowing. I am finding myself taking deep breaths more often.

None of my left toes and three of my right toes will not move, and I'm stumbling over my left foot a little more. I have no loss of sensation anywhere. Hand and feet reflexes are missing, and knee reflexes are hyperactive. Yes, I do have little fasciculations in random places, twitching in larger abdominal muscles, random muscle cramping, especially strange cramping in toes and feet.

Blood tested for everything, and it's all normal. Sleep study shows I have hypopnea and am desaturating during the night, hence the restless nights and sleepy days. APAP arriving next week. Brain MRI with T2Flair hyper intensities including in descending tracts, cervical MRI relatively okay, Lumbar and Thoracic MRIs w/wo contrast next week. Formal speech/ swallow study coming up. Not MG, Not GBS, Not MS, Not tick borne,

NCS okay, EMG was done by new resident, her first, and only limited area, so Neurologist wants to redo. And unexplained weight gain in torso in the last 4 months. Weird. No hyper metabolic state here. I'm frustrated because whatever this is, it is progressive in many areas at the same time. I need to make plans. Next neurologist visit isn't until July. PCP visit in May. No big university near here.

 

[ShiftKicker]

It sounds like you are going through the diagnostic process still and your doctors are gathering as much info via testing as possible to eliminate a variety of different conditions. Not knowing the cause or what might come next is a very difficult situation to be in. I am very sorry, as this must both stressful and frustrating. Some of what you report does not follow how ALS begins. I am hoping that with your upcoming tests, you will be provided a bit more information.

July does seem far off to wait for another EMG. You can try contacting the place doing the EMG and request to be placed on a waiting list and let them know how much notice you need to get there for last minute cancellations.

 

[lgelb]

Post TBI, several issues you describe are pretty common, so that's one possible contributor.

Even if you are not near Charleston or Greenville, which puts you near the center of the state?, I would consider it worth it to go to MUSC for a diagnosis, or even NC (Charlotte, Wake, or RTP). Or Augusta, GA.

You could still be managed after that closer to where you are, but as you say, getting a diagnosis is pretty important in your context.

 

[yaya12]

Since shortly after my initial post, I stopped reading the forums for a bit. Also since then, I did not do great with my swallow evaluation. Barium swallow is scheduled. I also tried APAP/CPAP per pulmonologist. That was a disaster. Tried three times including the last time with the respiratory therapist present to validate what I was experiencing. I could only tolerate a few minutes each time before I had to grab it off my face to cough and clear the mucous it was blowing down my airway. Thankfully, I was able to return the machine. I’ve spent too much time researching mimics and comparing symptoms. I think I’ve settled in to the diagnostic process while watching my body change. I have not said anything to family and only one friend. They just think I’m being lazy and a picky eater. Whatever.

 

[lgelb]

CPAP would not be indicated for ALS. BiPAP would. If you really got a CPAP, I'd ask for a BiPAP (they may need to code creatively depending on what clinical findings have been) and make sure you start at the lowest safe setting for you (IPAP 8, EPAP 4) to get used to it. I would also ask for a nasal mask if they tried a full face one.

What are the next steps in diagnosis?

 

[yaya12]

Thanks. Yes, it was APAP/CPAP. I had requested BiPAP. Sometimes I feel that the providers are not communicating with each other. I recently had thoracic and lumbar MRIs. Lumbar is not great, as expected, one bulge at T-10 also. I do not know what the nerve tracts look like. I already had spinal surgery for a nasty central canal and foraminal stenosis in 2023. Neurologist ordered more PT for this in hopes my feet will wake up and work again. Despite exercise, I am getting weaker. I'm loving walking with a byAcre rollator, but I don't want anyone to see me. Ha. At this point, the lack of voluntary movement of my feet has increased, mostly on the left. I also have increased quadriceps and upper arm weakness. Next up, barium swallow on May 2 - soonest available appointment, though I am on the cancellation list. My tongue has some obvious atrophy and increasing lack of control. In addition, I feel my brain is getting a little more "glitchy." More comprehensive EMGs and a new brain MRI to follow, but probably not until July at the earliest. I'm thinking of finding a different neurologist. I feel that my PCP and the speech pathologist are concerned, whereas the neurologist is somewhat aloof. I read a post about possibly visiting the VCU clinic for rapid diagnosis (or rule out), and I may just do something like that. I am in South Carolina, so I do not know if they will see me or if my insurance will cover. Maybe a trip to MUSC is a good idea. I can call it a seaside vacation. Crying now. Modafanil helps me get through my days, but insurance refuses to pay for it. I did find another source and am waiting to receive that. Thanks for being here. I will work on staying positive, but always having tissues handy.

 

[yaya12]

I asked 2 providers for records so that I could go to the VCU rapid diagnosis clinic. Nope. Instead, the neurologist did move my next appointment to 2 weeks from now instead of July. I guess the speech pathologist had a chance to talk with him.

My modified barium swallow is tomorrow. It will be interesting to hear what they think. Maybe the local neurologist learned a few things from the VCU website. Who knows.

I have been attending a folk dance class. I am very careful with foot placement so I don't fall. I noticed in the big wall mirror yesterday that my lower legs and feet are floppy now instead of controlled when I raise my knees. Just an odd observation. Just what I needed, to feel more self-conscious, as if throat-clearing, coughing, word-weirdness, and walking like I'm drunk aren't enough.

Then I got on my bike and rode home. I can't ride very far anymore, and mountains are only in my past. But my balance is actually better riding than walking, and I intend to keep going until I can't. Too chicken to try my mountain bike. My hands are so weak that I don't think I can hold onto my bike anymore. Sigh. I still don't even know what this is. I still wake up each day hoping my feet work again. Then I stand up.