Abnormal EMG, Issues with seeing neurologist

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NervousNerves

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Hello everyone.

I’ve been debating about posting here and I hope to not impose myself on this forum.

I’m currently going through the diagnostic process for worsening weakness and neuropathy. Weakness is occurring in my right foot. It started in March and has now become bilateral this month. I’m also experiencing cramping, fatigue, loss of fine motor skills in hands, and twitching.

I would prefer to discuss my emg results with a physician but I have hit a road block. I was originally referred to a neurologist by my pcp. The office is the highest ranked neurology program in my county. Based on my symptoms they performed an emg, and from my results have referred me to a university neurologist. However, they will not discuss my emg results with me and the university neurology clinic is a black hole where they will only take referral cases and not talk to the patients themselves, only the referring neurologists! I cannot talk to anyone at this point about the possibility of als and I’m just at a loss. I’ve attached my results. Is this consistent with als? Does anyone have any guidance?

thank you for taking the time to read my post.
 

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KimT

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You didn't post the summery so I'm going to take a guess. There was no spontaneous activity (positive sharp waves and fibrillations or even fasciculations (which by themselves don't really matter.) The EMG doesn't support a diagnosis of ALS.

Your doctor should be able to clarify the whole nerve conduction study and EMG and that should have been at the end of the study in a brief paragraph.

You were tested and your doctor owes you a detailed explanation. Part of that explanation should relieve you of worrying about ALS, according to your EMG.
 

NervousNerves

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I apologize Kim, that part of the emg had a lot of personal information. Here is the summary:

Moderate-severe sensory motor mixed axonal and demyelinating peripheral polyneuropathy. Overall electrodiagnostic studies suggest chronic disease.

Thank you for your response. Yes, I am quite frustrated. At the end of the emg I had a few moments to ask questions but the experience was quite traumatic and the doctor seemed in a bit of a hurry. Also the neurologist I was assigned and the neurologist who performed the study were two different people. The emg doctor indicated that all my questions and everything would be discussed with my follow up visit with the main doctor. But when I call to make an appointment they keep saying my case has been referred to the university and I should have had a consultation at the end of the emg and there’s no point in coming in☹️. The office is very nice and I quite like the staff, I just don’t think they understand the stress of being in limbo. I’m having trouble getting around and have already had to step down from a work position due to my limited mobility.

Regardless, thank you for reading about my case. There is no one in my life or anywhere else online I could find to ask this question, and I am very grateful this board exists and is filled with such knowledgeable people. Hopefully the university will give me a formal diagnosis. God bless.
 

Nikki J

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Neither the summary or the emg suggest ALS. There are many ways for emgs to be abnormal and most are not at all ALS.

depending on the degree of specialization at the University hospital you may be able to reassure yourself further ( rather than relying on sgoti) by looking at the doctor to whom you are referred. However medium size institutions may have less specialized neurologists so you couldn’t tell
 

lgelb

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By definition, sensory + motor polyneuropathy is not ALS, and a mixed presentation of demyelinating and axonal involvement is very common but requires further study to determine which is primary. There are neurologic but also other types of possible causes for the EMG findings, so likely, you are due for some lab work, and possibly other tests, before a more precise diagnosis is possible.

You always have a right to the diagnoses in your chart under HIPAA. Call or email the medical records department at the university if you are not getting answers elsewhere. There should be a recommendation such as further testing. You may have to get the smaller office and the university office into communication -- sounds silly, but sometimes that's what it takes.

Best,
Laurie
 

NervousNerves

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I was not planning on updating this thread, but I have an unfortunate revelation.
I was evaluated by another physician who suspects als and told me to follow up with the neuro muscular specialist. Since my post, I have lost dexterity and have weakness in both hands. I now have trouble clicking the buttons on things. I also have a tremor and it’s like my joints are popping in and out of place. I have trouble walking now with weakness spreading to my left leg. My ribs also hurt immensely.
My trouble is my original neurologist never sent my referral to the clinic and now it will be six weeks before I can even make an appointment. Who knows how long it will be before they can actually see me. I don’t know what to do anymore. Every day is a struggle to feed myself and just do normal things.

eta: I also have very painful cramping, fatigue, sore muscles, facilitation in my calves, thighs, fore arms, biceps.
 

Nikki J

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They looked at your emg and said that? I am surprised. Let us know what the neuromuscular specialist says.
 

NervousNerves

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I think the doctor was more considering my clinical signs and not the emg. He believes they will repeat the emg regardless at the university clinic.
To my knowledge, I have no UMN involvement... but the rate of progression and spread is concerning.
Is there anyway to expedite being seen by an als specialist? I’m scared to wait several months.
 

Nikki J

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You can ask to be on a cancel list. Once you have contact with the scheduler make friends. If it is true tell them you can be there with only x amount of notice. You might also ask if you may call to check and if so when is the optimum time.
 

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Small update.
I should be able to make an appointment with the neuromuscular center on Friday, so hopefully they can see me soon.

Right now I am in so much pain. All the joints in my hands hurt, my wrists hurt, and my hands are weak. I am dropping things and having difficulty picking up small things like pills. The pain sometimes radiates in my elbows and shoulders. I also get pins and needles feeling.

My left leg is also extremely painful. It hurts to put weight on it. The ankle, arch, heel, and calf hurt. I am still able to walk without a limp if I focus. My leg feels dead but has no visible atrophy. Facilitation’s continue in calves, rare in other parts of the body. My hands cramp if I over use it.

I am also extremely fatigued and just struggling with every day things.

Is there anything else I can do in the mean time? My GP just gave me tramadol but it did nothing for the pain. I am seeing him again on Tuesday and I’m going to ask about any other testing he can do. This situation does not seem right to me. Everyone is basically telling me to wait for the neuromuscular specialist...
 

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I agree that waiting for the neuromuscular specialist is the way to go. The other possibility is seeing a rheumatologist to rule out some autoimmune diseases and muscle skeletal issues.
 

NervousNerves

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Another small update.

I will have a repeat emg done next week because the neuromuscular specialist had difficulty interpreting my old emg. So it looks like I may get a diagnosis next week.

Since my last post, I’ve been twitchy in my legs and arms but not constantly. Just every now and then. I still have joint pain, loss of dexterity, weakness, but my muscles are not as stiff. I have pins and needles in my hands and feet constantly along with horrible nerve pain. I also get a strange vibration feeling often in my limbs.

I’m still exhibiting clinical weakness in my feet, but it doesn’t seem to have progressed and everything is symmetrical which is a good sign according to the doctor. Reflexes are normal.
Hoffmann sign negative.

I ended up taking a five day course of prednisone which actually relieved almost all of my symptoms, including the weakness, though it returned a few days after I completed the course. It actually fixed my limp though. I’m not sure what this means for my diagnosis.

Any input is appreciated. Thank you again for taking the time to read my post. Here’s to hoping for good news.
 

Nikki J

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The fact that prednisone helped along with the previous emg which did not indicate ALS, the lack of progression and symmetry all point away from ALS Let us know what your eventual diagnosis is but it even more than before does not sound like ALS
 

NervousNerves

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Hello everyone,

I do not have a diagnosis but als has been ruled out by the second emg and additional clinical examination. I apologize for taking so much of your time. Please stay safe and thank you so much for answering all my questions.
 

Nikki J

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Congratulations ! Best of luck
 
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