Feedback desired..

[Bear555]

About a year ago I noticed one of my toes couldn't raise - went to doc who said not to worry as I had no other issues other than some general malaise. About 4 months ago i noticed weakness in my left hand and a slight drop on my left foot. I was doing yoga and stood up to walk into my kitchen a few weeks ago and I felt like my legs were going to buckle - mostly my left leg and my arm was spasming as well - went to my primary who thought i might have MS so a brain scan was done in the ER as well as neck and back X-rays. No lesions that would indicate MS. Last night I noticed my left foot was swollen and the tops of my toes were pinkish (btw, I have no pain and no sensations). After elevating it the swelling went down some but is still slightly swollen. I'm hoping that this is nothing and will go away - in the meantime I was given an urgent referral to OHSU and see them next week. Needless to say, I'm a bit concerned and thought I'd post to get some feedback. Thank you for taking the time to read my thread...

 

[Nikki J]

swelling isn’t usual in ALS if you are still up and walking around. It certainly happens later when people are mostly immobile.

that said it is important to get checked out. You are seeing a neurologist? They will be able to determine if you have clinical weakness and or upper motor neuron signs like spasticity. If they do then they will presumably order more tests - likely blood work and emg/ ncs.

there is a post at the top of this subforum labeled important post about getting a diagnosis. Read it, if you have not yet done so, it will help you prepare for your appointment. It is excellent you are being seen so quickly

 

[Bear555]

Thank you Nikki - i will post an update.

 

[Bear555]

Update - OHSU Neurology is getting me on their books in the next couple of months. My zoom appointment was unconclusive since it was a zoom appointment afterall. I asked Dr. Brodsky his thoughts and he threw out cervical radiculopathy or MS. My son is a third year vascular surgical resident and doesn't agree that it's cervical radiculopathy and my MRI w/contrast and sequencing did not show MS lesion.
Since then my dropped left foot has not improved; my primary doctor has confirmed both upper and lower motor neuron deficit as well as weakness in my left arm and left leg. I have quite a bit of fatigue and there is visible atrophy in my left leg and left hand. I've dropped weight (unintentionally) of about 8 pounds. In the meantime, I practice deep breathing and just staying in this one precious day because that's the sweep spot for me as well as continually turning things over to a power greater than myself. Thank you for your time and blessing to you all..

 

[Nikki J]

What are your upper motor neuron signs?

 

[Bear555]

Pronator drift and spasticity is what I recall...

 

[Bear555]

My internist gave me the following info after my last appointment and am waiting to get seen at the ALS Clinic in PDX - they want me in ASAP. Here are the notes he wrote in my chart:

Lisa presented on 11/7 for L leg weakness, tongue fascis and dysarthria. MRI brain/spine were negative. Lab eval has been negative to date thus far as well (crp, ck, amp, trop, abc, peripheral smear all normal). Was seen by other provider in the interim for symptoms of dysphagia, and awaiting esophagram (which btw showed progression as I had my appt this morning). She comes in today to talk about continued symptoms. She tells me she has had exposure to multiple heavy metals in the past. This also includes a hx of Sertoli-Leydig tumor at the age of 15. She brings in paperwork that shows she was exposed to multiple heavy metals and chemicals as kids.

Neuro Comments: patient answers questions appropriately. Speech is fluent, face is symmetric. Notable tremor in bilateral hands with fasics of neck and feet musculature. Profound dysmetria on finger to nose on left, patellar reflex absent on left. Asymmetric atrophy of right glutel musculature. Atrophy of bilateral thenar eminence also noted. No pallor or rashes. Psych - thoughts are goal directed and appropriate.

To me this is ALS until proven otherwise. Constellation of bulbar symptoms, asymmetric extremity weakness with fasticulations and muscular atrophy. This has all been progressive over the course of the last two years. Very low suspicion for MS given her age.

Needless to say, I'm stunned..I am very grateful to have this forum as a source of support.

Thank you for reading.

 

[lgelb]

This isn't a diagnosis, and you haven't had an EMG that you reported, so I moved it back into your previous thread. Will continue to hope for another diagnosis.

 

[Nikki J]

Are you quoting someone when you say “to me ....”? If so who? The neuro? Something is clearly wrong but until you have been seen and worked up in the ALS clinic have hope. 10 percent of initial ALS diagnoses are eventually overturned and we have seen a number of people who were flatly told this is ALS by a general neuro be diagnosed with something else.

hoping for the best

 

[Bear555]

"To me..." is verbatim from doc.

I had my swallow test today and it has worsened - in fact they said the diagnosis on my chart is ALS. I too will hold out hope but my body tells me otherwise. Cervical Radiculopathy or MS were the only other possibilities and they're ruled out both at this point when looking at the constellation of my physcial manifestations. I think they're crossing their T's and dotting their I's re: EMG as well they should. I will let you know if you'd like, Nikki..

 

[Nikki J]

Please do let us know. Will be thinking of you

 

[Bestfriends14]

I'm so sorry you are in this limbo. Please let us know how things go. Hoping for the best outcome for you, which is no ALS. Fingers crossed.

Joanna