Cbp
New member
- Joined
- Jan 7, 2025
- Messages
- 5
- Reason
- Learn about ALS
- Diagnosis
- 00/0001
- Country
- UK
- State
- VA
- City
- Richmond
A little backstory. Starting in 2021 I have had 1-2 bad falls a year and some minor ones in between. I never thought anything of it at the time (I have always been a little clumsy). In February of 2024 I began having pain behind my knees. The best way to describe it is like a tight rubber band in the ? Ligament. Again, didn’t think much about it but it started making it difficult to walk. I was commuting at the time 1 1/2hr a day so I figured it had to do with being in the car so much.
It progressively got worse over the summer and it became increasingly difficult to walk. I thought perhaps I injured my back somehow and it was sciatica although I had no back pain. I started to have trouble lifting my leg to get into the car but again I just figured it was from the pain. Then rolling over in bed because difficult. Again, just figured it was pain related.
In the fall I started having falls very frequently, more than one a week. One fall I hurt my knee (the front of it this time). This caused it to be really hard to walk. I tried to drive but had difficulty moving my foot from the gas to the brake so I went to the ED.
In the ED they discovered some pretty profound weakness in my R leg and minor weakness in my L. They found I had really low B12 and thought it may be subacute combined degeneration of the spinal cord from low B12. I had to leave the hospital early due to a family emergency so I couldn’t stay long enough to get all the testing needed. I did get MRI of brain and spine that were unremarkable (no back injury either).
After discharge I took B12 injections thinking that was the issue. The weakness did not improve at all. The pain only improved if I was almost immobile, activity makes the pain/tight rubber band feeling worse.
My PCP saw me and set me up with a Neuro appointment to follow up. They wanted me to go to a specific Neuro MD. I didn’t think much of it since I trust my PCP and have been seeing them for years. My B12 is normal now but symptoms have not improved/got worse so they are thinking it isn’t SCD. I also have started dropping things all the time although I do not feel any weakness in my hands.
I have been doing Neuro PT since October with no notable/significant recovery in my weakness. My therapist did suggest asking my MD about Baclofen for the spacisity which has helped with the pain.
My appointment for Neuro follow up is Thursday. I got my appointment reminder a few days ago and looked up the MD for the first time. They are a neuromuscular MD specializing in ALS. I’m a bit freaking out since I saw that and haven’t slept in days. I did google and honestly don’t think I have any lower neuron symptoms (but I apparently don’t seem to notice things until they get pretty severe).
I have 2 days until my appointment and I’m really stressed. this clinic does all testing including EMG same day so I’m hoping I’ll get answers then. I’m really just hoping that I’m correct that there is no lower neuron involvement. Can there be lower motor neuron involvement and someone just not have symptoms? Also, this has been going on since 2021 so that alone should rule out ALS I would think. Not looking for a diagnosis but maybe a little reassurance so I can sleep tonight.
It progressively got worse over the summer and it became increasingly difficult to walk. I thought perhaps I injured my back somehow and it was sciatica although I had no back pain. I started to have trouble lifting my leg to get into the car but again I just figured it was from the pain. Then rolling over in bed because difficult. Again, just figured it was pain related.
In the fall I started having falls very frequently, more than one a week. One fall I hurt my knee (the front of it this time). This caused it to be really hard to walk. I tried to drive but had difficulty moving my foot from the gas to the brake so I went to the ED.
In the ED they discovered some pretty profound weakness in my R leg and minor weakness in my L. They found I had really low B12 and thought it may be subacute combined degeneration of the spinal cord from low B12. I had to leave the hospital early due to a family emergency so I couldn’t stay long enough to get all the testing needed. I did get MRI of brain and spine that were unremarkable (no back injury either).
After discharge I took B12 injections thinking that was the issue. The weakness did not improve at all. The pain only improved if I was almost immobile, activity makes the pain/tight rubber band feeling worse.
My PCP saw me and set me up with a Neuro appointment to follow up. They wanted me to go to a specific Neuro MD. I didn’t think much of it since I trust my PCP and have been seeing them for years. My B12 is normal now but symptoms have not improved/got worse so they are thinking it isn’t SCD. I also have started dropping things all the time although I do not feel any weakness in my hands.
I have been doing Neuro PT since October with no notable/significant recovery in my weakness. My therapist did suggest asking my MD about Baclofen for the spacisity which has helped with the pain.
My appointment for Neuro follow up is Thursday. I got my appointment reminder a few days ago and looked up the MD for the first time. They are a neuromuscular MD specializing in ALS. I’m a bit freaking out since I saw that and haven’t slept in days. I did google and honestly don’t think I have any lower neuron symptoms (but I apparently don’t seem to notice things until they get pretty severe).
I have 2 days until my appointment and I’m really stressed. this clinic does all testing including EMG same day so I’m hoping I’ll get answers then. I’m really just hoping that I’m correct that there is no lower neuron involvement. Can there be lower motor neuron involvement and someone just not have symptoms? Also, this has been going on since 2021 so that alone should rule out ALS I would think. Not looking for a diagnosis but maybe a little reassurance so I can sleep tonight.