Good emg feom neurologist but PCP suggests a second opinion???

[Jai06]

I had previously posted on here (it said my thread was closed?) I did have the emg done which was good. I let it go and accepted the diagnosis of fibromyalgia from my rheumatologist and neurologist.

Now here we are a few short months later and my PCP wants to send me to another neurologist for a second opinion because my muscle spams and weakness have worsened on right side.

My right hand and foot are the worse. My thumb feels like I can't use it and I've even noticed myself gripping things differently. My foot always seems to feel off. The weakness I understand from my knowledge is "perceived". Just typing this out my arm burns and gets tired quickly. The spams happen everyday from my face to me feet at random. (I've read on your sticky isn't common with als)

The only other things I've been diagnosed with is sleep apnea, hypopnea, and have an asthma rest coming up soon.

I can't understand why the doctor wants me re evaluated for neuromuscular disease and MS (not sure if that for in neuromuscular) . I have a friend who is around my age who unfortunately had ALS and her opinion is while some of my symptoms can be from ALS they're more likely from something else.

Is these ever a way to know for sure you don't have this? I feel so hopeless at this point.

Thanks for your time.

 

[Nikki J]

MS is a neuromuscular disease and there are quite a few others as well that are not motor neuron diseases. Neuromuscular is a much broader category that includes motor neuron diseases among lots of others.

Did your pcp say r/o ALS? Or neuromuscular? If the latter s/he may be thinking a completely different thing. And even if ALS was mentioned does not mean it is the primary rule out. Also pcps are not equipped to make complicated neurological differential diagnoses. They refer you when they are not sure as well as when they think something specific is the diagnosis

 

[Jai06]

She mentioned that she wants to rule out muscular diseases. Nothing in specific. My previous neurologist did the EMG but kind of pushed me quickly out the door afterwards. It seems like she was very quick to agree with the fibromyalgia diagnosis. I too believed it Fter the emg came back good.

She is just concerned mostly with the fasciculations I'm having. They happen very frequently and sporactically. My vitamin D and calcium were minimally low but they put me on supplements to see if helps.

I have people with fibromyalgia that say every thing I'm having can be a symptom of fibromyalgia.

I guess the question is can this still be ALS\MND with a clean EMG. I thought that was the "gold standard" test for this.

 

[Lkaibel]

I doubt very, very much anyone is going to diagnose you with ALS with a clean EMG. In fact I think it is literally impossible. I have heard tell of EMG's repeated on numerous occasions, and there can be grey areas - like finding chronic and active denervation in one area instead of multiple areas and having doubts as to the cause. However , and it is a big "However" I think with your clean EMG you can think of ALS in terms of being off the table. AS others have pointed out, there are numerous neurological conditions other than ALS.

I think following up with a specialist is a good idea, but honestly some Doctors get way too excited about fasiculations, and the Internet does not help much on that count for the patient. It is a common and non-specific symptom. It only means much in combination with actual, clinically measured weakness. In fact THE symptom, the defining moment of ALS is progressive clinical weakness. From your description, that does not seem to define your situation.

 

[Jai06]

I understand that.

My biggest question- my emg was done on the left side but 90%of my issues are on the right. Does that make a difference? Or would it show on both sides.

I was thinking this may be why PCP wants another opinion. I do have weakness in my right hand (mostly thumb) and foot. But it's weakness and pain. From what I've read ALS isn't normally painful until later stages?

The spasms are too sporadic to be significant. If id have nerve damage in every place that was spasming I wouldn't be able to do much.

My biggest complaint is my right hand and foot and how quickly my muscles fatigue, a year ago this stuff didn't happen.

Does the emg on the left vs right make a difference?

 

[affected]

They are pretty smart and know where to test. PCP's know squat about ALS, while neurologists take the whole picture of you into account and know if there is an ALS concern by the time you have sat down in the chair.

 

[Jai06]

I'm just afraid the new neurologist will want to do more testing. In ok with another emg. While they are uncomfortable they have no radiation. I've had so much radiation. Plus 4 MRIs.

They definitely have me worried again. Like I dId I personally know a person with ALS and my physical therpist knows another. My symptoms just don't seem to be progressing like that should of it were ALS.

Its been almost a year since onset of symptoms and while uncomfortable I can still do everything. Sometimes I really wonder if this isn't ligament or joint issue causing the "weakness" and pain.

Do you think the second emg is even necessary? Sounds to me Als is pretty well ruled out based on what y'all are saying?

 

[Nikki J]

You said you were referred to a neurologist for a second opinion. If you want to avoid unnecessary testing you should first go with an open mind. Tell your symptoms as concisely as you can Write things down and be specific. Ask what is wrong with me not is this ALS. Asking is this ALS narrows the focus and may make the doctor order unnecessary tests in an attempt to satisfy/ reassure you.

Make sure that all the relevant records are sent including discs of all imaging AND get your own copies and bring everything with you as organized as you can make it in case something got lost that was sent. If the tests are right in front of the neuro they are unlikely to repeat unnecessarily. What tests did you have that gave you so much radiation? Not MRIs they use magnets not radiation

 

[Jai06]

Thanks for the advice. I will certainly do that. So kind of like a symptom log?

The radiation.

When this first started it presented as spasms in my intercoastal muscles, shortness of breath, chest and upper back pain.

I had probably 30 chest xrays, 4 CT scans, Nuculear stress test, and a heart catherization.

Then they moved to my stomach. I had two studies done that involved xrays. A barium swallow, and an upper GI with low bowel follow through. Then to a HIDA scan for gallbladder.

Then it was my lungs. No radiation so far. A sleep study (which found the apnea and hypopnea) and a asthma rest coming up on the 26th.

Then my PCP wanted to check for artritis and did xrays of my hand, knee, and foot.

Then rheumatologist checked for ankolosing spondylitis and did xrays of my SI Joints.

Plus many many more tests that didn't have radiation. I feel like a test monkey.

 

[lgelb]

30 CXRs? C'mon, now.
Treat the sleep apnea effectively and see where that gets you. I wouldn't rush in for more EMGs, or anything else.

 

[Jai06]

I'm absolutely not joking. I kept having chest pain so I would go to the ER and it's "standard procedure" for that.

 

[Lixen]

It sounds like you're the one most worried about ALS despite a clean EMG. While progressing weakness is worrisome, you say yours is perceived weakness which isn't worrisome from a clinical standpoint. Most PCP's accept the EMG results & wouldn't rush for a second opinion based on continued fasciculations. They know that alone doesn't warrant a new EMG, nor are they worried something was 'missed' on the first EMG. And no, it doesn't matter if the side that was tested wasn't the side you are having issues with.

Your PCP may indeed be concerned that there's something going on with you but I doubt VERY seriously s/he believes it's ALS. You knowing someone with ALS surely has you in a state of hyper vigilance and I believe the second opinion referral was done for appeasement more than anything else. So, like everyone has said, you should approach this next apt with the mind set of 'Since ALS is pretty much off the table, WHAT ELSE could be causing my symptoms?'

Do I think you need an EMG? No, but I'm not a MD. It really depends on the discussion you had with your PCP and his/her reasoning for referring you out (meaning: a legitimate clinical concern vs reassuring a paranoid patient.) I personally see nothing you've described as being remotely ALS related.‎