Shelz432
New member
- Joined
- Sep 8, 2024
- Messages
- 4
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
Hello. I first want to say that I am beyond grateful for any precious time you can give in reading my history and explain why I am so nervous about ALS at this point. There’s a lot of information but wasn’t sure what would be relevant or not. I did read the notes but feel this is complex and wasn’t sure it met a certain category.
I am fully aware that I will not get a medical diagnosis on this site but with long waits in between specialists, I thought this would be a great source of insight or advice.
So let the novel commence…
So I’m a 40 year old woman. Married with two sweet kids.
I’ll try to keep this as short as possible. In June, I went to an ER due to full body vibration sensations and light spasms in my right (dominant) leg that spread to all other limbs from bottom to top. Initial tests indicated Guillain-Barré Syndrome (GBS) after a lumbar puncture showed high protein levels of 120. I also received multiple CTS/MRI’s and bloodwork during this time. I received a five day IVIG treatment while in the hospital but relief was only temporary. I went in again to a different ER (more neuro-focused) in July for a second round of IVIG for 3 days because the symptoms were still present. I then had a follow-up with a neuromuscular specialist and he had doubts about the GBS diagnosis after blood work showed it was no longer present-if it ever was there.
He performed a new neuro/reflex/strength evaluation that was normal and a lower body EMG with mild abnormalities, including: The R. Extensor digitorum brevis had abnormal MUP waveforms/abnormal interference pattern. In the R Superficial peroneal - Ankle study the response was considered absent for Lat leg stimulation.
Here was the Impression: (side note I had a lumbar Discectomy in 2022).
This is a mild abnormal study. There are findings suggestive of residual right L5 radiculopathy or previous peroneal nerve injury. There is no finding of demyelinating or acute axonal neuropathy or radiculopathy or plexopathy in this bilateral leg study. There is no finding of irritable myopathy either. Clinical correlation is recommended. (Is this verbiage concerning?)
It’s also important to note in June I had a sinus infection at my first ER visit, was put on augmentin , and developed C.Diff.
So new symptoms continue to emerge, 20 lb weight loss since June (could be from c.diff), full Fasciculations all day/ night and mostly in dominant lower leg but progressively moving all over, weak muscles especially on my dominant leg (feels like squeezing in my thigh) and in my hands (like arthritis with a ever so slight curl in fingers, I can still stretch them out straight but curl at rest) I have this gut feeling it could be ALS. I have an upper EMG scheduled (at my request) next month and an appointment with a different neurologist at OSU in November, but the uncertainty and waiting period have heightened my anxiety. So now I am of course seeking answers and ways to advocate for myself in the meantime and hopefully not making myself completely crazy with crippling fear of the unknown in the meantime
Also important to note: most blood work has come back fine for vitamin deficiencies (a 26 for vitamin D was the only low one).
No heavy metals etc.
And Brain MRI showed the following:
The brain sulci and ventricles are overall within normal limits for patient age. There are few scattered T2 hyperintensity foci in the subcortical white matter both cerebral hemispheres which are nonspecific in appearance but statistically likely represent chronic microvascular ischemic changes versus possible migraine related foci or less likely demyelinating disease in the correct clinical setting.
They are suspecting pots too due to the major increase in HR upon standing. I’ve been trying a magnesium supplement, and anxiety meds with no relief. My legs are still constantly spasming especially when lying down.
Way lower BP now than before as well and major insomnia possibly from the excessive stress.
There is now slight weakness (almost more tension feeling) in both arms/shoulders/hands/fingers especially my thumbs. I requested a Lyme disease test to rule out from my PCP. Does any of this sound concerning thus far? Anything else I can do/request in the interim?
Thank you so very much for your time!
I did have Covid for the third time in December as well.
I am fully aware that I will not get a medical diagnosis on this site but with long waits in between specialists, I thought this would be a great source of insight or advice.
So let the novel commence…
So I’m a 40 year old woman. Married with two sweet kids.
I’ll try to keep this as short as possible. In June, I went to an ER due to full body vibration sensations and light spasms in my right (dominant) leg that spread to all other limbs from bottom to top. Initial tests indicated Guillain-Barré Syndrome (GBS) after a lumbar puncture showed high protein levels of 120. I also received multiple CTS/MRI’s and bloodwork during this time. I received a five day IVIG treatment while in the hospital but relief was only temporary. I went in again to a different ER (more neuro-focused) in July for a second round of IVIG for 3 days because the symptoms were still present. I then had a follow-up with a neuromuscular specialist and he had doubts about the GBS diagnosis after blood work showed it was no longer present-if it ever was there.
He performed a new neuro/reflex/strength evaluation that was normal and a lower body EMG with mild abnormalities, including: The R. Extensor digitorum brevis had abnormal MUP waveforms/abnormal interference pattern. In the R Superficial peroneal - Ankle study the response was considered absent for Lat leg stimulation.
Here was the Impression: (side note I had a lumbar Discectomy in 2022).
This is a mild abnormal study. There are findings suggestive of residual right L5 radiculopathy or previous peroneal nerve injury. There is no finding of demyelinating or acute axonal neuropathy or radiculopathy or plexopathy in this bilateral leg study. There is no finding of irritable myopathy either. Clinical correlation is recommended. (Is this verbiage concerning?)
It’s also important to note in June I had a sinus infection at my first ER visit, was put on augmentin , and developed C.Diff.
So new symptoms continue to emerge, 20 lb weight loss since June (could be from c.diff), full Fasciculations all day/ night and mostly in dominant lower leg but progressively moving all over, weak muscles especially on my dominant leg (feels like squeezing in my thigh) and in my hands (like arthritis with a ever so slight curl in fingers, I can still stretch them out straight but curl at rest) I have this gut feeling it could be ALS. I have an upper EMG scheduled (at my request) next month and an appointment with a different neurologist at OSU in November, but the uncertainty and waiting period have heightened my anxiety. So now I am of course seeking answers and ways to advocate for myself in the meantime and hopefully not making myself completely crazy with crippling fear of the unknown in the meantime
Also important to note: most blood work has come back fine for vitamin deficiencies (a 26 for vitamin D was the only low one).
No heavy metals etc.
And Brain MRI showed the following:
The brain sulci and ventricles are overall within normal limits for patient age. There are few scattered T2 hyperintensity foci in the subcortical white matter both cerebral hemispheres which are nonspecific in appearance but statistically likely represent chronic microvascular ischemic changes versus possible migraine related foci or less likely demyelinating disease in the correct clinical setting.
They are suspecting pots too due to the major increase in HR upon standing. I’ve been trying a magnesium supplement, and anxiety meds with no relief. My legs are still constantly spasming especially when lying down.
Way lower BP now than before as well and major insomnia possibly from the excessive stress.
There is now slight weakness (almost more tension feeling) in both arms/shoulders/hands/fingers especially my thumbs. I requested a Lyme disease test to rule out from my PCP. Does any of this sound concerning thus far? Anything else I can do/request in the interim?
Thank you so very much for your time!
I did have Covid for the third time in December as well.