Initial Neuro was wrong...

[ama672]

Hello,

Well I just went to another neuro earlier this afternoon for a second opinion. I told him about my left arm weakness (primarily in the bicep and tricep areas) as well as my tremors and twitching, excess saliva, excess phlegm, stiff neck, and breathing difficulties. He did a THOROUGH clinical exam that took about 45 minutes and said that yeah my left arm is definitely weak and that since I don't have a pinch nerve in the neck, he is considered that this could be more sinister like ALS. He also said that I don't have any other symptoms of UMN or LMN damage other than left arm weakness but that doesn't mean it isn't ALS. He said it's possible. He's going to evaluate my MRI more thoroughly and I'm scheduled to have an EMG on Tuesday.

By the say, this neuro specializes in nueromuscular disorders and was a lot more knowledgeable than my prior neuro. Although I'm glad that I went to this neuro, now I'm freaking out more because he said that I shouldn't just have weakness without any pain or numbness. He also said that ALS is very different for each person and its possible for it to start with weakness as the only UMN symptom and still have a negative EMG (he's seen at).

It's gonna be a rough weekend. I have less confidence in the whole medical community now (how can one neuro completely dismiss it and then another neuro said yeah something is definitely up). I knew something was wrong with my body. CRAP.

 

[ama672]

In the last 4 weeks, the following has happened:

4 weeks ago: Noticed left arm weakness when I couldn't lift that much.
2 weeks ago: Noticed excess saliva and phlegm
1 week ago: Noticed arm tremors and bodywide twitching
3 days ago: Noticed that my neck is weak and my facial muscles tire easily
2 days ao: Shortness of breath issues

Yesterday I went to the gym and luckily I have the SAME AMOUNT of strength in my left arm as 4 weeks ago. If it were ALS, wouldn't it be slightly weaker by now?

Please any insights would be appreciated.

 

[brooksea]

You don't get numb with ALS. And ALS is not that fast (4 weeks).

 

[lydia]

I am curious why he is giving you a second EMG in four weeks. Did he not trust the results of the first? Who did your first one and who is doing the second? Is the specialist himself doing the new one?

 

[ama672]

He said that diagnosing ALS can be very subjective and more of an art than science sometimes. He also said that the person who administers an EMG is more important than the results sometimes. So yeah, he doesn't trust the initial results and will do the EMG himself.

On the way back from the doctor I was so depressed that I accidently hit the back of someone's car. What a terrible day. I wish I can just sleep tonight and never wake up.

 

[brooksea]

I don't know what quack, er doc your went to see, but that was totally out of line to suggest ALS with no EMG that he trusted having been done.

 

[awieleba]

ama~

Please dont get nervous about the weakness. At my first neuro appt over a year ago I had she noted weakness on left side and thinning on hand. she did the c-spine and my first emg. It was all normal. I then went to an als specialist with ALOT of sx, including brisk relfexes and jaw jerk with twitching (umn & lmn) and she NEVER mentioned als. she threw out things like MG, polyomyositis or autoimmune things but wasnt jumping to als and she is an als doc. I cant believe this guy! Anyway I have weakness, not clinical and it hasn't gotten terrible worse over the past year, so yes you may feel weak and in fact be a little weak as was I, and it not progress into clinical weakness. I have had muscle biopsy and 3 emgs and 4 clinicals at an als teaching university hospital Over the last year and half and been told that I dont have ALS. So please dont start the panic mode yet. Just hold tight for your emg. IF you have NO umn or lmn signs (according to your doc) other than your arm weakness I cant even understand why he said ALS? I mean you have to have umn and lmn and meet a criteria to be diagnosed with als.
anyway, dont let this ruin your weakend (opps frueden slip).
Have some wine and relax, always does the trick for me.

april

 

[Zaphoon]

You are wondering how neuros can have such differing opinions; its easy. To some doctors, it is just premature to bring ALS into the conversation on the first visit. There are just too many other things to rule out first.

There are differing schools of thought among neurologists. You happened to come across 2 that differ in opinion. This is very, very common.

For now, I would throw ALS out of your mind. It hasn't been proven yet. You still have to go through testing for a myriad of other stuff.

It can always be something else until it just can't be anything else.

Let's see what the doc can rule out first before getting to anxious over ALS.

Zaphoon

 

[Blackpool]

I am new and wondering is this where I post my question?

 

[hopingforcure]

yes you can ask a question, just like you posted.

Ok how can you have als without UMN and or LMN symptoms, cannot have als without those things.. This neuro is an outright jerk..

 

[Zaphoon]

Hoping is correct. You need to have both UMN and LMN signs in order to have a diagnosis of ALS. You can, however, have motor neuron disease with only upper or lower motor neuron death but you can't have ALS unless you have both.

Zaphoon

 

[crystalkk]

Have you had any other tests done, besides the emg and the cervical mri?
What bloodwork have you had? I would send the bill to the nuero for scaring you and causing an accident.
Please try and think positive it could be many other things, especially if you are not showing any upper motor signs.

Please hang in there and good luck with the emg.

 

[ama672]

I have UMN symptoms including muscle weakness, excess saliva, excess phlegm, breathing difficulties, and muscle stiffness/sourness. This neuro went to Johns Hopkins and did a 2-yr fellowship in the Mayo clinic specializing in ALS under the top ALS specialist in the country (he knows his stuff). He said that if it's not a pinch nerve, then it could be something sinister like ALS or other MNDs. He said that he's seen cases before where my symptoms turned out to be ALS in other people. That's why I'm freaking out because this guy obviously knows his stuff and was very objective with me. He did like 15 different bulbar strength tests (I didn't even know that you test your muscles like that).

 

[hopingforcure]

Ok I thought you said that he did not find UMN problems, and UMN problems are imuscle stifness and spasicity, clonus, babinsiki sign, hoffman's. You seem totally irrational about this, your last post seem's overly anxious, settle down, think straight.
Wait for emg. most of the symptoms you mentioned are not symptoms a doctor can diagnosed. they are things that a patient describes, and are taken in context of the entire situation as a complete picture.

Once again the doc said you did not have any UMN OR LMN except arm weakness...... Now how can he or you even mention ALS?

 

[brooksea]

15 bulbar tests? WTH? A joke right?

From Associated Content: (about SELF testing)

But is this endless menagerie of testing necessary? "If a person is really worried about having bulbar onset ALS, inspecting the tongue is not the exam to perform," says Kristina Lafaye, M.D., board certified neurologist, assistant clinical professor of neurology at Tulane University School of Medicine, and full time clinical staff director of the neurophysiology lab at Ochsner Medical Center. "If they do not have any problems with swallowing, chewing, or controlling their secretions, then they do not need to bother looking at their tongues."

Nevertheless, visual inspections of the tongue is a common, time-sinking occurrence amongst individuals suffering from bulbar onset hypochondria.