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Mela

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Good Morning,

First, I would like to say that I am truly humbled by the members of this forum, who daily give their advice, encouragement, insight to strangers filled with worry. You truly are special people that inspire me to do good and “pass it forward”

I never thought I would need your help, but I do. I am a 41 year old female and mother of 3 small little boys. I’ve had the worst summer of my life due to some crazy symptoms. I have some questions, that I was hoping you can help me with.

Starting in April, MAy, I started to have some weird symptoms: Intermittent electric shock numbness to the right side of my tongue. By the first week of MAy, the symptoms progressed with variable tongue tingling and burning through my mouth.

Saw a Neurologist- had a good Neuro exam except he thought my Left tricep was weak, which was weird because i had known absolutely nothing wrong with my Left arm at all. All blood work and Brain MRI was negative except i had a pretty low B12. He thought that was the definite cause of my sensory mouth symptoms and started injections immediately. He assured me that that they sensory symptoms in my mouth were definitely not ALS.

Approximately 8-10 days later, my left arm became weak over a 4 day period. No radiating pain, no numbness, no tingling, no neck pain. The arm just became weak and shaky and my 4th and 5th fingers suddenly felt weird with fine motor skills, My right jaw also locked up 3 times over that period.

Saw my neuro again- exam was again good, but he ordered an EMG for my left arm. NCV was normal. EMG was performed by our local ALS clinic specialist-it was not clean. According to the specialist, it showed C7 root chronicity through 3 muscles, Left tricep, forearm extensors, and Cervical spine. It did not show any pattern of MND in any of these muscles, just chronicity. He only did my left arm, because did not see any MND “problems”. I thought this was very odd because I dont have a history of neck dysfunction except for occasional stiffness 1-2 times a year. Had a cervical MRI to prove the results and it did not show much degeneration at the C7 levels.

3 days after my EMG, i looked down at my left hand and noticed visible atrophy of the Left hypothenar region of my hand where my ADM is clearly sticking out. Nobody had noticed it before. Showed my neuro and he ordered another EMG scheduled in mid-August. Even with seeing my atrophy, he continues to say that he doesn’t “believe” it to be ALS, but doesn’t give me a reason why, just going by his clinical experience.

I have seen an orthopedic and neurosurgeon and they both do not believe my neck could be causing my weakness or hand symptoms.

As I wait for my next EMG, I really feel like my hand is worsening, with subjective weakness of my wrist and finger flexors and now apparent thinnning of my palmar and thenar regions. Even as I type this, my Left hand feels completely different. I can actively move wrist/fingers in every way, but I just feel like it is wasting away. My tricep fasciculates at times and is weak.

That is my story: I have great anxiety that this next EMG is going to be doom day for me and my young family.

I have a few questions:
Though I have NOT had numbness/tingling symptoms, I have had a hot, burning sensations or nn “sensations” intermittently through my hypothenar, thenar, wrist crease and palmar regions. Have you guys ever felt a “burning” or Nerve sensation as Your muscles are wasting?

How many of you had an EMG that showed only chronicity at first and then “changed” to MND wavelengths in subsequent EMGs?

For those of you with hand symptoms at onset, did you “feel” your hand wasting away, as I feel? And did you feel your symptoms come on pretty suddenly like in a 7-10 day period when they first started?

I know my story sounds odd, but my husband and I are both Physical Therapists, and we are pretty knowledgeable about orthopedic neck conditions, etc.. and This truly does not seem like a typical orthopedic problem to us. I am so worried and depressed about the neurological possible diagnoses. All I know, is that there is something very wrong with my left arm and hand. Any insight would be truly appreciated. Thank you so much.
 
Here’s why I don’t think you have ALS.

1). Electric shock numbness to tongue. That’s a sensory symptom. ALS involves motor neurons.

2). Left triceps weakness and finger weakness coming on rapidly in several days. ALS isn’t that fast. Even rapid progressors will have more subtle findings at the outset. Atrophy also doesn’t come on that rapidly.

3). Hot burning sensation — not ALS.

I’ll go for the radiculopathy theory. Some radiculopahies are primarily motor. Have you had MRIs of your cervical spine an brain? I’d also suggest a chest X-ray with an extra view of the lung apicies (to rule out any compression/ thoracic outlet obstruction).
 
Agree with Karen, Mela -- without knowing exactly what the cervical MRI showed, would ask about a CXR and a second read or repeat of the MRI. What you're describing isn't ALS-like, but it is of concern.
 
Thank you- but if we took away my sensory tongue symptoms, and just thought of the hand, I really wanted to know if you ever “felt” any type of symptoms as your muscles were atrophying? Like can you “feel” what muscle may be next in atrophying or do you JUST notice by weakness. My arms are naturally very thin—so I was wondering if that is the reason that I may be “feeling” (in terms of burning) more than the typical ALS patient as my hand is atrophying?
ALso, is it worrysome to you that I did not have a clean EMG to begin with? I’m so scared the wavelengths are going to change for the worse during my second EMG in August. Do “chronic” wavelengths have a habit of changing during subsequent EMGS when you have ALS?
My Cervical MRI showed multi-level DJD but more at the C4-C5, C5-C6 levels. I had it independently read by an ortho surgeon and neurosurgeon and neither think there is enough compression to cause hand (C8-T1) symptoms...I’m so scared. I know that it is very weird that my arm/hand weakness occurred just suddenly. In fact, all of these symptoms are in the past 8 weeks. I do have pretty normal grip strength at this point and am not dropping anything. My hand/fingers/wrist just do not feel normal. Any other insight would continue to be appreciated. Thank you so much.
 
I'm just going to post one thing from my own experience. About 20 years ago I was in a car accident. MRI on neck was, at first, normal. I was experiencing arm and hand weakness and my shoulder would freeze if I overused it. I ignored it for a couple of years. Then it started bothering me again so I had a repeat MRI on my c-spine. Showed nerve impingement in more than one area. I went to PT and it made it worse. Finally I used traction and it improved. The pain and weakness resolved.

As to your questions, you know from your profession and from reading this forum that everyone is different. I have lots of pain and sensory symptoms but they are caused by issues other than ALS. Many of us here have other issues besides ALS and as we age, that possibility increases. I've been diagnosed with Hashimoto's, Meniere's Disease and fibromyalgia (all long before ALS.) Recently, during a genetic study they uncovered yet another health condition. So even if people tell you they've had sensory issues, ALS might not be the cause. I have a badly torn rotator cuff from falling during a run in 2013. The same shoulder developed tendonitis and bursitis per recent MRI.

My first EMG was in 2014 and it showed both active and chronic, indicative of motor neuron disease. I was still strong at the time so I was not diagnosed until 2015.

I would want an MRI of both my c-spine and t-spine.
 
Thank you so much to all who have replied thus far. * I was wondering if I could possibly obtain some insight from individuals who's first sign was either in the hand or tricep? Specifically, what were your particular initial symptoms in these regions? DId anyone see atrophy BEFORE really feeling weakness?* I'd greatly appreciate hearing of your experiences.
Also, I have such fear of this next EMG in August that I am barely sleeping. Please, can anyone tell me if a dirty EMG that showed only "chronicity" in certain muscles CHANGED to chonic/active or fibs in subsequent EMGs? I don't know much about EMGs and just really want to know if this happens alot or at all in MND. Thank you and God Bless.
 
Mela, we’ve already told you we don’t think you have ALS. When you come back asking more questions, it becomes evident you don’t believe us. That you’re losing sleep over this speaks to your anxiety.

I will tell you that those of us with ALS don’t “feel” weakness. We lose the ability to perform certain abilities like clipping finger nails, fastening buttons, standing on toes. There’s no “feel” to this.

Please don’t post again until after your neuro visit and EMG in August.
 
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