10 years with new symptoms

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help1127

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Learn about ALS
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Good Afternoon,

Let me start off by saying that I am sorry if these questions become redundant. I know I'm on a ALS forum and I'm relying on PALS to give me advice. With that said I like to give a brief description of my symptoms since they started.

2011- started with muscle twitching in my abdomen when I would lay at night. Didnt pay much mind to them as they only came once in a while.
2013- started twitching all over my body. At times they were worse than others.
2014 - twitching continued and I was having a felt slight weakness in my right leg and my legs would shake uncontrollably when walking down stairs. Made my first appt to see a neuromuscular specialist in town who check my reflexes and performed and emg. Said my reflexes where somewhat brisk but not pathologic and that my emg was clean. "NO ALS"
2014- Continued feeling twitching and made an appointment with USF who again did an emg and physical "NO ALS"
2015 - Continued with the twitching feeling of weakness in my leg plus stiffness in my torso. Made an appointment with UF for a third opinion who repeated an emg and physical. Said Brisk reflexes, positive Hoffman, no clonus, strength 5+ throughout.
2017 - Returned to UF still having issues with my legs shaking, twitching and some weakness in my left leg. Performed another emg and said I may have some type of Hereditary Motor Neuropathy.
2018 - Returned for a follow up visit Doctor says he retracts his diagnosis of Hereditary Motor Neuropathy, and not to worry that its not a ALS or a motor neuron disease since he has not found any weakness in the years he has been following me.

Fast forward to today, I been working out and now I developed issues with my left elbow which appear to be Tennis elbow, twitching in my left arm shoulder, right arm and legs. Arms tendons are tight and now feeling it in my right leg. Shoulders hurt when I sleep plus having pain and discomfort when trying to lift my left arm.

I'm scheduled for another appointment on the 20th for another emg to see what's going on and hopefully I don't get an ALS diagnosis after 10 years since my symptoms started.

Has anyone heard of anyone getting a diagnosis after 10 years? I just doesn't seem to fit the timeline.
 
No I haven’t.
please obey the rules. You posted in general which you know is not allowed.

it still doesn’t sound like ALS. Let us know after the emg
 
The most pertinent of the many many threads you've started here in the last 8 years.


You have been asked by one of the moderators to not post til you receive results after your next appointment in a week. You tried to post again. Please don't do this.
 
Help1127, you do need help... not here however.

You joined in 2013. You have posted 16 Threads, you have sent
94 messages, you have received over 100 replies,.

2014 you ere told you had a clean EMG... "NO ALS".

You've had two EMGs. Neither have you posted the summary/conclusion
at the bottom of the report.

2018 you were told by a neurologist...

"....not to worry that its not a ALS or a motor neuron disease since he
has not found any weakness in the years he has been following me."

Now a 3rd EMG... only post again when you can post the summary
conclusion at the bottom of the report.

Finally.... this has gone on for total of 12 pages over the past 8 years.
 
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You need help- your life and thinking is not controlled or rational. Years of wanting a disease so badly that you've wasted a decade chasing it is not healthy and is quite sad. Your family members and friends are to be admired for dealing with your neurosis. Get counselling and in the interim, read this link. Goodbye.

 
I've not heard of getting a diagnosis after 10 years but, just because it's not ALS, doesn't mean it's nothing. Continue working with your neurologist and, if necessary, ask for a referral to Mayo in Jax so you can rule out autoimmune diseases and other things that might be causing your symptoms.

It's a very good sign if you still have strength, not just as a a means to rule ALS out, but for any other issue you might be facing.

I'm thinking things like fibro plus BFS could account for all your symptoms but your doctor will figure it out.

Try laying off the exercise for a week and focus on hydration, meditation, getting lots of sleep, no caffeine, and eating healthy. See if that makes any difference.

Best wishes.

Feel free to post the results of you, hopefully, last EMG.
 
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