Neurology follow up

April E

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Hello...

I posted here a year ago, but that thread is closed. I would like to post a follow up if i may.

A year ago I had a negative physical exam and a normal EMG, as well as a "subclinical" MRI of my brain.

In the meantime, I've had a significant decrease in power and endurance. I was always the one to set the pace, with my purposeful stride and my 36 inch inseam. Now I can't keep up with the pokiest of people. I went to Disney Land with my grandkids, and my son had to physically lift me out of some of the rides. The walking was brutal. It's a profoundly disturbing sense of something very wrong in my universe. I continue with the cramps and twitching as before, but now i have the added pleasures of stiffness and pain, especially in my legs. I kept trying to convince myself that I'm just getting older, etc., after all, I had the negative neuro exam and the golden ticket of a normal EMG.

I just had my one year follow up, and I now have clinical weakness in my right leg and assymetrical reflexes in my knees. The left one is hyper-reflexive when compared to the right. I think he mentioned something about other reflexes, but I sort of zoned out while trying to absorb the words "abnormal exam".

I have orders for a stack of labs, for strange things (syphilis?), a MRI of my lumbar spine and cervical spine, and an EMG and NCS. The EMG/NCS is scheduled for August 1st.

I know you guys can't diagnose me, and I know I just have to live my life (New episode Stranger Things tomorrow...YAY!). I'm just wondering how worried I should be?

Great big thank yous to anyone who takes the time to read this and to respond...

April
 

Nikki J

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Sorry you are having a bad time. It would be helpful probably if you got your exam notes so you knew what the exam really showed a weak leg and a more hyper reflex on the other could be your right leg reflex is normal for you and your left hypoactive because of whatever is making it weak.

It sounds like your neuro is looking at everything - as they should. Testing for syphilis is quite usual as well as HIV and a host of other things.

I can’t say how worried or not to be as you really don’t know the details of the exam. There are certsinly many things it could be and a lot of people who started the path you are beginning end up on utterly different roads.

Try to enjoy your summer as you can only go through the tests to see where you are headed and worry definitely doesn’t help
 

KarenNWendyn

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You’re correct that we can’t diagnose you. Just be assured that there are many other more likely conditions that could explain your symptoms. ALS is usually at the bottom of the list because it is quite rare. The discomfort you notice actually points away from ALS.

And I’ll be watching Stranger Things along with you.
 

KimT

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April,

I know how hard it is to not know what's going on. All I can say is try to keep your mind on other things. I hope they find out what it is and I hope it's something that can be easily treated.
 

April E

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Nikki, Karen and Kim:

Thank you so much for responding. Intellectually, I know all I can do is wait. It is what it is and all that. I vacillate between philosophic acceptance and abject terror.

Although the EMG is scheduled Aug 1st, my follow up appointment isn't until Sept 5th. IDK if the doctor who does the EMG will share the results at the time of the test, or if I will have to wait unti the F/U appt.

I will post again, either way, after the EMG, when I have some answers. I hope it will prove to be some ridiculously benign malady that will serve both to expose my hypochondriosis (is that a word?), and to reassure others on their diagnostic journeys...

And let us hope that Stranger Things maintains the charm amidst chaos and destruction that has made it so compelling. :)

Thanks again!

April
 

April E

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Hello and an update:

I spent an hour inside a MRI machine Monday, had 10 tubes of blood to check for 16 different things drawn and provided a urine specimen on Tuesday, and had an EMG/NCS today.

The Doctor who performed both the EMG and NCS initially said he was doing an arm and a leg, but then after doing so, he said he needed to check areas on my neck and upper back. I thought "Uh oh, that's probably not a good sign". Then he said everything looked ok. Is that typical? I mean, is it maybe automatic to check the neck and back without mentioning them specifically? He said he hadn't seen MRI results, so I gather it wasn't to correlate any findings. He asked when my followup appt is with the neurologist who ordered the tests and said he would have the report there. He was very kind and personable, and even older than I am, which is unusual these days.

I don't know how EMGs are processed. Is it an instant read on the part of the Neurologist, or is there time required for analysis and interpretation of the results? I feel stupid. I should have asked him to clarify. When he said he didn't see any of the terrible things, I grabbed ahold of that and ran. (Or, at least hobbled as quickly as my stiff legs would allow)

Thank you to all of you who read and respond and teach.

April
 

KarenNWendyn

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He probably did all those areas to help correlate with MRI results. Keep in mind EMG tests for many other conditions besides ALS.

Keep in mind that your evaluation is in progress. The fact that “everything looked ok” is a good sign against this being ALS, but you’ll want to wait for the whole evaluation before you get a diagnosis and management plan and more explanations.
 

April E

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Thank you.
 

Nikki J

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Those areas are pretty standard to do in a screening EMG. And the result is instant but it is common that they say they are sending it for your neuro to review. I don’t believe they would ever say it looked ok if they saw anything remotely worrisome.
 

April E

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Thank you, Nikki.

I was thinking the same thing. Medical ethics. I was so lacking in knowledge regarding EMG interpretation that i wasn't sure if he actually knew for certain or if he was offering a "best guess" pending final interpretation. Thank you for clearing that up!

My follow up appointment is September 5th. I will post the conclusion to provide education for others.

Thank you again,

April
 

April E

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Hello...

I had my Neuro follow-up on Thursday and wanted to post the results for others who may read this thread in the future.

I have a "right paracentral/foraminal disc protrusion with partial effacement of the right lateral recess and mild right foraminal narrowing" at L3/L4. The neurologist said that this is the cause of my lower extremity symptoms. The differences in reflexes are related to the disc problem, much as Nikki suspected. I also have c-spine disease (bulging discs, facet arthropies), but we did not discuss those, in retrospect, so they may have been irrelevant. My blood work was good, with the exception of a boderline low B-1. The Nerve Conduction Study was normal, this study did not show carpal tunnel as did the previous study. The EMG was normal. I took him at his word and did not ask for a copy of the tables or the narrative interpretation. This may be irresponsible, but from what I've seen here, many times people are told their exams are normal, only to become fixated on verbage in the report, which transports them back down the rabbit hole. I want to avoid the rabbit hole. Just a thought for future pilgrims on this path.

I am to have physical therapy and if I worsen, he would like for me to meet with an orthopedic surgeon. He said I don't need to return to him unless things were to change in the future. He was wonderful. His name is Dr Miravelle, if anyone in the future stumbles across this thread and is looking for a neurologist in the Ft. Collins, CO, area. He was very thorough, thoughtful and kind.

I wish all of you the best, and wanted to express my gratitude to all of you. I only wish that instead of endless technologies developed to annihilate one another, there were endless technologies developed to heal one another.

With hope for the future,

April
 

April E

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An addendum to the above:

As Karen pointed out, it's important to wait for the diagnostic process to be completed. All of that information must be gathered, interpreted and assimilated. Do not consult Dr. Google in the meantime. It will just make you crazy and serves no purpose. Wait for your face to face with the Doctor who can evaluate all of the diagnostics and who can evaluate you face to face.

I saw a sign in an office that said something like, "oh yes, your Google search is equivalent to my medical degree". Tongue in cheek, of course. But something to remember.
 

KarenNWendyn

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many times people are told their exams are normal, only to become fixated on verbage in the report, which transports them back down the rabbit hole. I want to avoid the rabbit hole. Just a thought for future pilgrims on this path.
You are very wise. Please heed your own advice and reread this thread should you ever be tempted to go back down that rabbit hole in the future.

Thanks for updating us and best of luck in the future.
 
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