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KITT

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Aug 19, 2011
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State
Arkansas
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Little Rock area
Hello All,
Well I had my neuro appt yesterday. I will have to say this neuro was soooo much better than the 1st one I saw. I wish I could have seen her in the beginning and I think I would be a lot further down this road by now. Anyway, she was very kind and caring and seemed attentive and listened to my concerns. She said it was very difficult to tie all my symptoms together to fit one thing. That was not a surprise to me. She said that some of the symptoms sound like MG while others do not fit. However, she wants to check for MG (and its variants) again. She said she did not believe I had ALS. She did a fairly thorough clinical exam....way more than the 1st neuro had done. She checked my reflexes and if she noted any problems she didn't tell me. She had me do several things that I am assuming were testing my strength and coordination. She did detect some weakness in my right leg, which concerns me especially since I seem to notice some wasting in my right hip. I tried to point it out to her but I don't know if she really saw it. I plan to ask her about it again when I return. This is also kind of interesting because it seems most of my problems are on the left side of my body. Anyway, she wants to do an EMG. They were supposed to call me today to schedule it but I haven't heard from them. She told me it would be within the next 2 weeks and that she would perform it herself. She had them do the blood work for MG again.
Of course, I was happy to hear her say she did not think it was ALS! But it is still difficult to let go of all the fear when you return home and all the symptoms that concern you are still there. I question whether I portrayed the symptoms accurately for her...but her testing should tell the story. I know many of you probably think I am a hypochondriac who just can't let this go. But this is not like me at all. In fact I can't remember the last time I went to the doctor before all this began. My only drs visits were OB/GYN :)
And I have read the stickies. They are helpful in many ways, but still raise some questions. I know ALS is not supposed to be about pain, but then other posts will discuss the pain they are experiencing. I know with AlS things "fail", but do you not experience some sort of weakness in arms. legs, hands etc. before that happens?
I will be hoping and praying that the EMG comes back clean and confirms without a doubt that this is not ALS.
I'm sorry I've written another novel and I said I wouldn't.
Thanks for listening and thank you for your courage and the encouragement you are to me.
KITT
 
KITT, I'm glad that she doesn't think you have ALS, and the EMG will be the answer for you... it will detect problems long before you see them. I was mad last year during an EMG that they saw issues with my arms, and a year later I do have issues with them.

I'm not the expert here, but my understanding is that pain is associated when the nerves are dying, and by the time the muscle are atrophied the pain is usually gone... I could have this backwards. All I know is that I had major cramps in my left leg long before I had much difficulty in walking or saw any atrophy. I thought at the time it was charlie horses due to lack of magnesium or potassium.

And of course we all can have pain related to other skeletal issues such as arthritis, etc. And from using muscles to do something they weren't designed for, such as my arms hurt from me trying to climb the stairs with my arms pulling me and pushing with a cane.

Good luck, and remain positive!
 
KITT,

With ALS symptoms, there is no need for the patient to portray them for an experienced neurologist. The symptoms will be obvious. In fact, an experienced neurologist will find things like weakness, spasticity, and the like in places that the patient hasn't even noticed yet.

Too many questioning folks in this forum are far too dismissive of the clinical neurological exam and think that the other tests such as EMG make or break the diagnosis -- not true. The laboratory tests are done to confirm and expand upon the clinical findings.

If your neuro has told you that she doesn't think it is ALS, based on a clinical exam, you should rejoice. ALS causes a set of symptoms in the muscles it affects and those symptoms are easily detected during a clinical exam. Obviously, she didn't find that set of symptoms, which is why she can say that she doesn't believe it's ALS. Why be so glum about such good news?
 
Amen, the clinical exam is uber important..
 
But I'm wondering if I should be concerned if the neuro said nothing -- one way or the other -- during the initial exam? What does a 'clinical exam' entail per se (don't mean to be daft but it seems every term has a specific meaning)? he used applied resistance, asked about sensitivity, and observed me walking.

He said 'no red flags' and mentioned that it appears to be a CNS issue but wouldn't say like these other posters -- "you don't have ALS."

I don't know what one should think then.
 
He said 'no red flags' and mentioned that it appears to be a CNS issue but wouldn't say like these other posters -- "you don't have ALS."

I don't know what one should think then.

Personally, I'd interpret "no red flags" as meaning nothing serious to worry about. However, the best thing to do is to ask the doctor what he meant by what he said instead of coming here and asking a bunch of strangers who don't know your doctor what he meant.
 
I would trust the opinions of a good neuro any day, test or no test, but that's just me.
 
No red flags is a good thing. I wish I'd heard something similar. My clinical exam was full of 'red flags', and continues to be.

Pain in ALS is normally seen with severe spasms. In those further along, it's from side-effects of months of inability to move--which can cause severe pain in the joints. Unfortunately, the nerves that ALS doesn't kill are the nerves that control pain.

If the doctor had seen something suspicious--they'd have told you that: 1. You need further testing. 2. I'm referring you to X because ... 3. I'm very suspicious of these signs--let's re-evaluate you in 3 months.

While most neuros won't tell you what they are 'thinking' when they see things---when they say something like "no red flags" there is nothing noted that appears of an especially worrisome nature to them.

And another thing--if there is muscle wasting--please believe me that there is no doubt in the doctor's mind. They can see atrophy--even in early stages--very often before we see it ourselves.

For example--my neuro noticed atrophy that even I, with 30 years in the medical field, didn't notice myself. And no, I'm not a doctor. But the neuro noticed atrophy that I'd simply not observed--as it isn't pronounced like the atrophy between my thumb and forefinger.

My signs were bad enough that 3 neuros told me they suspected ALS based on Clinical Exam alone....you've had 2 that don't see it--rejoice. Many, many things can be wrong--and they'll likely find it--the 'deadly' one has been pretty well ruled out. Good luck on finding an official diagnosis and hopefully a treatment and cure for you.
 
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