Going for 2nd opinion

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lisa g

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I have some questions about my test results from my neurologist and was hoping someone could explain my results. I have pictures of the EMG and nerve conduction reports and am trying to figure out how to insert them.(not that tech savvy). I have an appointment for June 27th with a neuro specialist at the Cleveland Clinic in Weston Florida for a second opinion. Can someone tell me how to insert the information?
 

ReginaS

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Hi Lisa,
you would put these images on your computer in a location that you can find easily, maybe "desktop". Then you would come here and start a new post. There is the line of formatting tools right above the field where you type. Use the rectancle between the 'chain links' and the 'camera'.
Click on it and insert the pictures - either one by one or all at once. Not sure what's easier or possible. If you do 1 image then you can always repeat the process and do the next one afterwards.

If you are on your phone the process will be similar. If you have trouble finding your photos to attach them I would use a desktop or laptop.
 

lisa g

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:confused::confused: I must be doing something wrong. I have put the pictures on my laptop on the desktop as thumbnails but when I try to insert them it's asking for the url or the http.
I will ask a couple of questions until I can figure it out.

I was diagnosed with als on 4/11. I was sent to the neurologist by my pcp after explaining I was unsteady on my feet and feeling my speech was slurred. The neurologist ordered an MRI- clear, VNG- normal, Braincheck- normal, Blood work- except slightly lower WBC and Absolute Neutrophils. (I have allergies). I had a barium swallow test 2018-normal. My EMG came back abnormal stating ongoing active denervation, with chronic neurogenic changes in all 4 segments (cranial, thoracic
paras Pinal, upper and lower extremities) Diagnosis ALS. I was put on 50 my Riluzole twice a day.

The motor exam was as follows, 5/5 neck flexion, 5/5 neck extension. No involuntary movements. No fasciculation noted.Normal bulk and tone through out. No drift or pronation. 5/5 jaw opening strength. No facial asymmetry. Full range of expression. Hearing acuity intact to verbal. Midline palate. Shoulder shrug strong and symmetric. Midline tongue protrusion with quick lateral movements and strong strength. No tongue atrophy or fasciculationso. Sensory-normal.

Reflex testing- right side to left
2/2 Biceps, 2/2 Triceps, 4/2 Brachioradialis, 4/2 Patellar,2/2 Achilles. Planters down going bilaterally.
Coordination- no dysmetria noted
Gait- able to stand up from chair without assistance.

My question is am I missing something? Yes I can definitely feel something is going on with my body but, I still am able to walk 4 miles a day. If I don't walk I pedal on a stationery bicycle for 5 miles at low intensity and I use 5lb weights every other day to work my arms. Am I still in the early stages of ALS that I'm still able to do these things?
 

KarenNWendyn

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We’d be happy to look at your EMG. Take a picture of it (the part listing results in all the muscles) as well as the summary and conclusions. When you type your message, click on “attach files” (lower left, with paper clip symbol). A cue will come up that says “photo library”. You can then click on the images out of the photo library to add. If you want to check to see if they uploaded before posting, you can click on “preview “.

I assume the specialist you’ll be seeing is a neuromuscular (ALS) specialist? That would be optimal.
 

lisa g

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I have tried and tried and have not been able to upload the pictures to this site. Is there anyone that I could email these to and see if they can post them?

👍
 
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KarenNWendyn

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You may be one of those people who manifest EMG changes in advance of clinical symptoms, which is why we advise people that the EMG can not be done too early.

A second opinion is still a great idea.

I’m glad you’re on Riluzole. For now, take care to avoid falls, maintain your weight, and conserve energy. Exercise while you still can as long as it doesn’t wear you out and you feel safe doing it. Enjoy life and make hay while the sun shines.
 

lisa g

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Thanks for the reply. I wasn't thinking the diagnosis would be different, I've already made peace with that. The Riluzole does alleviate symptoms temporarily. I will still go for my 2nd opinion and yes it's with a do neurologist specialist at Cleveland Clinic. I will update you when I get the results from them. In the meantime I'm thankful for the borrowed time to still do everyday functions.
 

lisa g

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Definitely being careful not to fall. My husband watches me to make sure. I am definitely making sure to maintain my weight. I have currently increased my calorie intake to 2,000- 2,300 calories per day. I am vegan and monitor my diet closely. I have managed to put on 4 1/2 lbs.
 

Kristina1

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I'm kind of shocked they would diagnose you with a normal clinical exam. I would definitely get a 2nd opinion with an experienced ALS specialist an an ALS Clinic. I'm sorry you find yourself in this situation. Wishing you the best.
 

lgelb

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Lisa's clinical exam was not quite normal, Kristina. Abnormal reflexes (4/2) in upper and lower extremities (arm and knee) suggest upper motor neuron dysfunction.

Coupled with an EMG demonstrating acute and chronic lower motor neuron dysfunction...

But of course a second opinion will be invaluable.
 

lisa g

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I am going back to Cleveland Clinic on the 8th for another EMG. I guess I will use this to gage progression from my last EMG done by the original neuro that gave my initial diagnosis back in April.

I didn't ask the original neuro alot of questions I was in shock and denial and just left the office with my script for Riluzole. Now 4 months later I'm still in the dark about a lot of things and have a notebook full of questions to ask mainly from getting info from all of you on the forum.

Cleveland Clinic ordered some MRI's of Thoracic and Cervical w/wo contrast. Thoracic came back negative, but the Cervical came back with some questions. I'm posting a copy of that report. I will go over with it with my doctor and while I don't think this is the main cause of my symptoms I'm wondering if it's contributing to the urgency to urinate and the feeling of pins and needles and numbness that comes and goes in my left are and leg?

One last question, I'm still covered by my private insurance medicare kicks in October. Should i have Dr.write a script now for a rollator or is it better to wait for Medicare?
 

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Nikki J

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Arm symptoms maybe. I don’t think the other It might be worth a second opinion look at your mri though. I had 2 radiology reads on my lumbar mri. They were vastly different and the mgh one gave me hope my leg weakness was from my back even though I had no sensory symptoms. It turned out the mgh read was wrong

If you need a rollator don’t wait. I don’t know whether you would get better reimbursement from medicare or not but we are not talking about a massive expense. The cost of a fall in suffering and likely progression is huge and treatment for injury wouldn’t be cheap money wise either probably
 

KarenNWendyn

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A rollator can cost $300 or less depending on the type you purchase. Most are less. I just ordered mine though Amazon and paid out of pocket, not bothering to wait for insurance. You might even be able to borrow one through your loaner closet.

Since you have some symptoms that don’t line up with ALS (e.g. pins and needles, urinary urgency), and MRI findings, a second opinion will be important. They can also see if your physical exam shows evidence of progression consistent with ALS. As for the MRI, they shouldn’t have to repeat it. But a conscientious clinician will go over it with the radiologist to see whether or not your clinical findings line up with the MRI findings. Not all MRI findings are clinically significant.

Now that you’ve been hanging out on this forum for a while, you’re in a better position to ask relevant questions and to understand and remember the answers.
 

Nikki J

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I was not suggesting another scan Karen. I was suggesting another reading of the existing one
 
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