Beyond nervous!

[Shelz432]

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.

 

[ShiftKicker]

Hi there-

Please make sure to read here first: Read Before Posting. It explains why, although you have a long list of issues and symptoms that must be concerning to you, your symptom pattern does not match anything that would concern a neurologist for ALS. A couple of serious infections, many non ALS symptoms that sound systemic and no clinical exam that indicates a motor issue means an entirely different direction of diagnosis. So, while it is a relief to you that ALS is not at all in the picture, you still have unanswered question. What are next steps with your neuro?

Of interest possibly to you: Covid19 and Neurological Symptoms

 

[Nikki J]

It sounds like you have had quite the time

No the verbiage is not at all concerning on the emg. Nothing at all suggests ALS in the description of the findings or in the interpretation

Your mri sounds like it is probably just going to be those chronic changes but demyelination is not an als process. It is an ms one

I suspect this is post c diff and or post covid. It does not suggest ALS to me at all

 

[Shelz432]

I will be having an upper EMG. My specific concern related to ALS is where he found the abnormality in my legs is where the fasciculations stemmed from and are most prominent by my ankle and calf and have slowly moved to the other leg with more sporadic ones in my shoulder etc. accompanied with stiffness/weakness in leg and upper extremities. They happen all day every day and night.

 

[lgelb]

It is pretty common for benign fascics to extend like that, all the more so when a serious bacterial infection has left you weakened. I hope in pressing for a second EMG, a scarce resource, that you are prepared to accept the results.

 

[Shelz432]

This is what was written on my latest examination:

Examination findings are notable for distal lower motor neuron findings in the lower extremities with decreased tone and reflexes at the ankles and right distal fasciculations as well as high reflexes at the patellas with crossed adductors. No abnormalities of sensation or motor strength on exam.

We discussed in detail that her examination findings could all potentially be explained by multilevel degenerative disc disease. We have very low suspicion for AIDP/GBS at this time due to retained and increased reflexes at the patellas and intact upper extremity reflexes as well as intact sensation and strength throughout. The distribution and pattern of onset of her sensory symptoms affecting the right leg followed by the left also would not be typical of the expected presentation for AIDP with ascending symmetric findings. We recommended MR imaging of the entire spine to evaluate for degenerative disc disease or other cord or nerve root pathology to explain her symptoms.

The LMN verbiage is what I’m questioning?

As I am not a doctor, there was no change to my images from last time from what results stated??

 

[lgelb]

LMN findings in lower extremities bilaterally coupled with parallel sensory deficits do not fit any pattern of ALS onset. I would certainly proceed with the recommended spine MRI to rule out a treatable cause there, especially given your spine history. I agree with the notes that on the basis of what you have presented, AIDP/GBS are unlikely as well.

 

[Shelz432]

The MRI’s were performed with no further change. Can this still rule out ALS with consistent fasisculations and weakened muscles and not having an upper EMG?

 

[lgelb]

Lots of concern about ALS can be allayed without an EMG, yes. But you had one, and it didn't suggest ALS. It rarely takes two, and certainly not this close together. The hallmark is certain abnormalities even in areas that you think are fine.