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Update: went to another Neuro at another university hospital.

Sorta treated me like I was crazy. I asked if we needed another emg, she said "no, not yet." She told me not to use the word "fasiculations." I said I have undulations in both shoulders, both legs (especially left), vibrations in both legs and sometimes feet.

Said I have "fibromyalgia." Wants more physical therapy out of me. Being prescribed physical therapy doesn't seem like a happy ending.

Today, my left leg and foot feel weak, as they usually do.

I made an appointment with another neuro who only does EMGs for next week. Not sure if that's a good idea.
 
Not a good idea for another EMG.
You are actually second guessing a neuro - again?

Here in Canada, one cannot make appointments with specialists without a referral. I'm thinking that's not a bad thing, just about now.

Good luck with the fibro.
 
Not a good idea for another EMG.
You are actually second guessing a neuro - again?

Here in Canada, one cannot make appointments with specialists without a referral. I'm thinking that's not a bad thing, just about now.

Good luck with the fibro.

I'm still anxious. The neuro, who is a specialist, seemed to focus more on mental health. Did do some more bloodwork.

I feel like I've lost weight, esp in the butt-arm regions. I'm sitting on my thigh bones. I feel like I'm walking on my hamstrings even since I started the first round of PT in March.

Occasionally, my fingers might get stiff, and when pulling my left toes up, the pinkie toe goes sideways.

I used to get cramps all over the bottom and the sides of the feet, but those stopped a month ago.
 
I'm still anxious. The neuro, who is a specialist, seemed to focus more on mental health. .

Your neuro is very smart.

He/she showed you a door - please enter and get the help you need.

Sad to tell ya, but the help you need ain't here.
 
5 different neuros since March - Do you realize how crazy that is? That is why the last one talked about your mental issues because your behavior is not normal. -how many more will it take before you believe any of them? You don't like what they say so you make an appointment with a new one. NOTHING YOU HAVE SAID SOUNDS EVEN REMOTELY LIKE ALS, NOTHING!

we don't want to hear about your aches and pains--they are not ALS related symptoms, nothing you have said sound like ALS. You need to find a new forum for hypochondria. Only an idiot would spend their time and money trying to get diagnosed with ALS. Go away--
 
Wait, you have been to 5 neuros already? You don't believe them when they said fibro? Why not? They told me I had Post Viral Fatigue which is basically chronic fatigue plus fibro and I RAN out of my neuro so happy with that diagnosis, as sad as that is. I do not want to get another EMG ever and neither should you. In Chicago where you are, they have some of the best neuros at the university hospitals there, you should trust them in my humble opinion. I know it is hard and you can go to your next appt and get another EMG but I personally would look into things that may help with fibro. Go to a rheumatologist. Look into pacing yourself. I have been doing this and it is helping a bit. Also, I am taking magnesium and they are treating my Vitamin D deficiency and I think that is helping too. Am I a 100% better? no. But I am not worse and that is all that matters to me right now..Best to you.
 
What I would like to know is how a person can see 5 different neuros in 3 months time. I really don't believe it for one minute, nor do I believe your idiotic story. All made up.
I think when school starts back a lot of these "crazy" stories will disappear.
 
I'm confused. Is one of these neurologists a specialist in ALS? I went to a neuro but she specializes in MS, since my symptoms are progressing, I've now made an appt with a neuro who specializes in ALS. That means I will have seen two neurologists. 5 seems pretty extreme, unless they've all been grossly incompetent...which seems unlikely...
 
5 neuros in 4 months here.

Went to the first one because I at first thought brain tumor because main symptoms were headache, weight loss, and swallowing problems. MRI showed no tumor and the neurologist didn't offer any other explanation. This was before I learned that neuros are as inquisitive as a bag of hammers and you have to walk them through the diagnostic process. Her next available appt. wasn't for five more months, so I booked a second neuro.

Second neuro, head of ALS clinic, was completely insane.

Third neuro was good, but had no answers. Wouldn't see me again when my symptoms worsened.

Fourth neuro just went by report of third neuro and refused to do further testing.

Fifth neuro is good and I will have an EMG on July2nd.
 
I guess incompetent neuros are running rampant.
 
Re: Neuro

Second neuro, head of ALS clinic, was completely insane.

What did the head of the ALS clinic do for you to give him that diagnoses?:p

Hey dog,
Hope your questions are answered on July 2nd and your EMG isn't dirty.:smile:
 
The head of the ALS clinic had two students from the university examine me. They were clueless about how to perform a neuro exam. For example, one of the students hit my knee about two inches below where you're supposed to to elicit the knee reflex, so my foot barely moved. I asked them to step back so I could hit the correct spot with the heel of my shoe and show them the 3+ reflex. One of them then tried it... with my friggin shoe. it was like monkey see, monkey do, and it pretty much went that way for the whole exam.

They leave and the head neuro comes in. She starts yelling at me right away, asking why I come back every ten years thinking I have ALS. (I was there in 2001 or so with UMN symptoms/signs.)

I explained my swallowing difficulty to her and my rapid weight lost of 15 lbs. She said I looked like I could lose another 25 and started yelling something again. I couldn't make it out, but I think it was German. Somehow though, she scheduled an EMG.

To test my bulbar issues, they did an EMG of my right leg and arm.

At the follow-up appt. a few weeks later, she came into the room yelling again, saying "you don't have ALS, why are you so fixated on it?"I asked her why she ordered an EMG of my right leg and arm to detect bulbar issues. She said she did the EMG just for my benefit because I don't have ALS. I said an EMG of my leg wouldn't necessarily detect bulbar ALS, so it really didn't benefit me and was a waste of time. She walked out.

I got a copy of the report a few days later. She wrote that she thought conversion disorder but that I was probably delusional and psychotic and that I threatened her office staff by demanding an EMG for "his bulbar symptoms." The quotes were present, I guess, to emphasize how psychotic it is for someone with swallowing problems, twitching, arm/leg weakness, brisk reflexes, breathing difficulties, and about 20 other things to think they have ALS. (I had called and spoke with a member of her staff a few days before the follow-up appt. and politely asked if she could ask they dr. if it was possible to schedule an EMG of the bulbar region. I was beyond polite, like I always am, to a fault almost.)
 
5 neuros in 4 months here.

Went to the first one because I at first thought brain tumor because main symptoms were headache, weight loss, and swallowing problems. MRI showed no tumor and the neurologist didn't offer any other explanation. This was before I learned that neuros are as inquisitive as a bag of hammers and you have to walk them through the diagnostic process. Her next available appt. wasn't for five more months, so I booked a second neuro.

Second neuro, head of ALS clinic, was completely insane.

Third neuro was good, but had no answers. Wouldn't see me again when my symptoms worsened.

Fourth neuro just went by report of third neuro and refused to do further testing.

Fifth neuro is good and I will have an EMG on July2nd.

I sympathize with you.

The first neuro I went to was an old man who looked me over externally.

The second was good with tests and imaging, bust says she doesn't know what to do.

The third said I have Small Fiber Neuropathy from his tests, said he'd help me with a treatment plan, and now doesn't follow up. He just keeps referring me to #2.

I typed out all my symptoms to the fourth one I saw yesterday. She didn't agree with he SFN diagnosis. Did further bloodworkShe agreed to do a follow-up in September.

I took the Lyrica that was prescribed for me for the first time last night. I woke up at 3 am, and felt very unsteady. I know that's listed as a side-affect, but I now still feel unsteady and weak.

I'm wondering if the Lyrica decreased spasticity?
My legs, especially the calves and knees, still ache in burning pain, especially when standing. I feel like I''m losing more weight, too. Haven't done much activity in the past month. Some fingers seem to randomly get spastic and move on their own.
 
I got the 2nd emg.

Tech said it was normal.
I don't have the report in, yet.
I am still having little fasics and vibrations here and there; sometimes my right hand feel weak. They tested the right arm with the needles, but not my left leg (which usually gives me troubles).
 
You do not have ALS!


Dance.... for you and for those of us who can no longer dance.
 
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