first visit to Neuromuscular Doctor

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Audrey1952

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Joined
Mar 26, 2015
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Reason
Learn about ALS
Country
US
State
Illinois
City
Rock Falls
Since this disease seems to be so hard to diagnose, to better help my Doctor out. I would like to know is what would you with more experience with this illness suggest I bring to visit as in the way of history?
 
To answer the question it would be helpful if you would tell us where you are in the testing process
 
Show your doctor the paralyzed limb. If you can't do that, you might ask yourself why you're thinking about ALS?
 
Ah, Mike, what paralyzed limb...? One post with no mention of paralysis...
 
Might be bulbar Mike, careful there ;)
 
I have been to my regular Doctor,who sent me to neurosurgeon(he thought my leg weakness and cramping and foot drop could be herniated disc). At first did find one on L5. After therapy disc is better but movement and falling still happening. Believe tested read ok. So I was sent to anouther neurologist who said I have weakness in right leg and my gait and balance is bad. I now use walker. He ruled out multiple sclerosis and Parkinson's. Now sending me to Neuromuscular Doctor after Mir's looked ok to him. This has been over the last two years. Beginning to get weaker and arms starring to get weaker too. Just want to make sure this is not a waisted visit two hour drive for me.
 
So you have not yet had an EMG? Even if they say they have sent all your paperwork get copies to take with you of all tests preferably get a disc of any mris. Get consult notes too from ortho and neuro. That is the biggest thing so they have all the data. Otherwise when I go to a new doctor I bring a summary of my medical history. It speeds things up include your meds, allergies, current medical problems like diabetes blood pressure etc if any, significant past illnesses, surgical history, so called social history ( tobacco, alcohol,recreational drugs if you are comfortable putting on paper, marital status, children,occupation) family history ( if you do not have significant neurological family history this can be very brief. If you do have big neurological issues there they will want to know age of onset and at death if they have passed). They would ask all of this and you do not have to do it but it speeds things up and ensures you do not forget.
Think about how you will explain your symptoms important things are usually timing of onset and what you can't do. My leg is weak is vague something like I can't climb stairs with that leg or it collapses ( be prepared to show how. When I started symptoms I was able to demonstrate how my ankle gave out and the EMG doctor immediately identified the problem muscle) so be specific as possible. Hope this helps
 
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Good luck Audrey. Back in 2007 this forum gave me lots of support and kindness when my husband was seeking diagnosis. He got lucky and has CIDP. Hope you get lucky too. I think Nikki covered most things. Any history of serious viral infections or flu like illness preceding your symptoms. His neuromuscular specialist did ask about gastro symptoms prior to his hand and leg weakness/atrophy onset. Also do your symptoms ever abate and get better was another question. And whether you have been exposed to any toxic chemicals, well water with arsenic, sprayed property with herbicides etc. Have you traveled to any 3rd world countries prior to symptoms. Best of luck to you. Let us know how you do please.
 
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