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PierreLee

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I am desperate to believe I have anything but ALS. Desperate. But every symptom points to ALS. If anyone knows of someone with these symptoms who did NOT have ALS, it would be much appreciated.

I will say I have been to see a neurologist, but have yet to have my MRI. She said it is not a pinched nerve. I am 41.

Symptoms:

1. Fasciculations all over body, mostly in right leg
2. Foot drop (right leg)
3. Muscle atrophy in calf (right leg)
4. Hyperreflexia (right leg)
5. Painful spasms in calf (right leg)
6. Clonus in ankle (right leg)

These symptoms have been going on for around 8 months.

I was holding out hope for MS (sounds odd to say) but it looks like the symptoms don't add up.

I have had no trauma to my back or any back pain, or previous diseases.

I have an 8 month old son who I am so afraid will not know me. I am looking for any hope, but it looks like it is definitely ALS.
 
Um, "definitely ALS" is a strange leap to make. There is no point in speculating without an EMG, but all we know for now is that you have a right leg issue, for which possible etiologies are numerous.

Check back with us when you have an EMG report...

Best,
Laurie
 
Are you able to go see a specialist? Have you been referred for an EMG? I would get one before saying "definitely ALS". You do need all other testing ruled out before coming to any conclusions. Do make sure it is someone who specialises in EMGs.
 
I am trying to get in with an ALS specialist, don't know how long of a wait I will have. I have not been referred for an EMG yet, I'm guessing they are waiting until after the MRI is done.

I shouldn't have said "definitley", but the symptoms seem to point to nothing else from what I have read. I looked through all of the diseases it could be mistaken for, and none seem to fit, or other symptoms of mine rule other ones out. For instance many of the diseases seem to only have damage to upper or lower motor neurons, but it looks like I have damage to both.

I just feel lost and scared. I want to see my son grow up, and I am just realizing that I might not get that chance.
 
Pierre, yes, you could have ALS but you could also have many other illnesses. don't waste your time playing doctor by diagnosing yourself on the internet--nothing good will ever come of it and you will only feel more and more anxious. make you appointments and go back to living until you get an answer. ALS is not the only thing that will keep you from seeing your son grow up--think of all the people who died in Vegas yesterday. So go give him a kiss and play with him NOW. that is all any of us are promised.
 
Are you being seen by a community neuro or by someone in one of the teaching hospitals?

I go to the MGH ALS clinic and they wanted to see my abnormal EMG before booking the appointment.

It is not unusual to order things in a stepwise pattern and MRI first is reasonable. Once you have those results it will dictate the next step.

I understand that you are scared and yes your symptoms are worrisome but there are other causes so you need to let the doctors do their jobs hard as it is. When is the MRI
 
Thank you for your reply.

I have seen just a neuro in my area, I am trying to get in to see someone at a teaching hospital. From what you said, maybe it's a good idea I call him and see if we can schedule an EMG asap.

My MRI is next week, on Weds.

Do you know any of the diseases that would cause the symptoms offhand? Just looking for anything at this point!
 
That wasn't the message I was trying to convey. Your mri is a week away. Results are usually back quickly. Then your doctor can help you plan the next step. If you ask anything of her it should be that once the mri is back if it does not hold the answer that she THEN tells you what is next in her plan and moves on to that. It may be an emg or something else.
 
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So if it is ALS what do you do differently? Worry more? The diagnosis of your symptoms is important but your life doesnt change so much one way or the other...you either have it or dont. Go cuddle and play with your child. Take pictures....read them books and record your voice doing it. Your child will always cherish the pictures and recordings, regardless of your diagnosis.

I get this may sound a bit harshbut really the diagnosis of ALS is very hard to deal with. I hope your mri points elsewhere.
 
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