Status
Not open for further replies.

GoGreen123

Member
Joined
Mar 15, 2013
Messages
18
Reason
PALS
Country
US
State
Ct
City
Hartford
Hello all. I was recently diagnosed with ALS. I would like some advice and information on some of my symptoms and if anyone can help me out.

Some background information- Some of my symptoms were; speech where I could only whisper and talk very quietly, feeling in my hands and my right arm felt like a 'log', my hand I would not be able to clip my nails or extend out my fingers and I could not lift my arm above my head, I also had muscle weakness, soreness, tiredness, and I my legs felt weak. I also had twitching and I could not close my fist without having to pry my fingers open and extreme pain. The doctor diagnosed me with ALS and with those symptoms I listed.

Now my symptoms are as follows. I could now lift up my arm and swing it over my head multiple times without feeling of weakness or tiredness, my arm no longer feels like a 'log', I have strength in my arm I didn't have previously. I can now extend my fingers to the fullest and they are no longer bent. I can also make a fist without muscle cramps and having to pry my fingers open. Also, previously I could only talk in a low tone and I could not yell. I could only whisper and talk quietly, now I can yell and sing songs while playing the piano with my fingers. Also, my leg weakness is subsiding and I have very little twitching as compared to before.

Now with everything I read online and multiple textbooks, I have not read about being able to do these things once I lost them. In textbooks, on this website, and many more articles and websites i read that it either stays the same (rare), progresses slowly, progresses fast. It never reverts back because you no longer have the neurons needed. Now I would like some advice on what some personal experiences or anything else. Like I said, my arm no longer feels like a 'log' i can un bend my fingers, crush containers, my speech is much better where I can yell and scream.

I read online that once your brain and nerves don't make the connection in your arm/leg or elsewhere those neurons can not come back. So I wouldn't be able to extend my fingers and swing my arms over my head. My speech is better and also my energy.

Does anybody have any good information or resources? Can anyone give me some advice and help me out? Anything would be appreciated. Thank you very much.
 
Sounds like you might benefit from a second opinion on that dia g no sis.
 
Sounds like you might benefit from a second opinion on that dia g no sis.
Thank you for the response momap53. Any particular reason why? I would like to get some opinions and info. Do you have anything to help me? Thanks again.

Does anyone else have any suggestions or anything? Thank you.
 
Davo

It sounds like your doc was simply wrong. I spent a long period with an entirely dead right arm. it was finally determined it was some sort of stroke, or perhaps something that 'fixed' itself over several years.

Did your doc ever do an EMG or just base ALS off clinical alone?

I've never heard of it getting 'better'. I'd see another doc to be sure--and enjoy the return of what you've regained!
 
Davo

It sounds like your doc was simply wrong. I spent a long period with an entirely dead right arm. it was finally determined it was some sort of stroke, or perhaps something that 'fixed' itself over several years.

Did your doc ever do an EMG or just base ALS off clinical alone?

I've never heard of it getting 'better'. I'd see another doc to be sure--and enjoy the return of what you've regained!
Thank you for the response. I was diagnosed with ALS. The doctor did do an emg but I haven't seen anything with these signs getting better. Like I stated earlier, it has significantly improved and I am seeking advice and help from this forum. The doctor did the tests and everything else to get diagnosed with ALS. It was by a neurologist.

Thank you for the help and response and if anyone else has any information that would be great.
 
Davo

It sounds like your doc was simply wrong. I spent a long period with an entirely dead right arm. it was finally determined it was some sort of stroke, or perhaps something that 'fixed' itself over several years.

Did your doc ever do an EMG or just base ALS off clinical alone?

I've never heard of it getting 'better'. I'd see another doc to be sure--and enjoy the return of what you've regained!
Thank you for the response. I was diagnosed with ALS. The doctor did do an emg but I haven't seen anything with these signs getting better. Like I stated earlier, it has significantly improved and I am seeking advice and help from this forum. The doctor did the tests and everything else to get diagnosed with ALS. It was by a neurologist.

Thank you for the help and response and if anyone else has any information that would be great.
 
Davo, no one gets better like that--you should definitly get an 2nd opinion. go to a neuro who is experienced with ALS, maybe an ALS clinic. many Neuros never see ALS their entire careers because it is rare so they are not the best at diagnosising it.

Man, I am excited for you--you could be one of the truely lucky ones! to not have ALS would be so wonderful!
 
Barbie,
I was referred to a neurologist at a hospital for special care which specializes in neurologic diseases. I had 3-4 tests (emg, blood, MRI, etc and the ALS diagnosis followed. My daughter and her boyfriend have done extensive research and have found no symptoms coming and goin like I'm experiencing. It's very frustrating and even more so that the doctors really seem to have no suggestions. I have yet to tell my neurologist about how my symptoms are right now.

I am trying hard not to get my hopes up that it could be something different than ALS, but from what I see when my family and I are researching, it really makes me wonder.
 
I would also have my doubts as well.

ALS symptoms never, ever improve. Why? Because is a chronic Denervation occurring in your brain stem and your spine.
"Chronic" means something ongoing, something that (unless a miracle occurs) will not stop and, Denervation means that all your Motor Neurons (either UMN or LMN) are being targeted for destruction.
Therefore, there is no improvement in your symptoms if you indeed would have ALS.

If you notice improvements in your symptoms after a while, and...those improvements are tested rigorously by a reputable Neurologist, then you might be healing which is not the case with ALS.
With ALS, you may have what we call "good days and bad days" but that by any means mean improvement of your symptoms, it's just a state of mind.

Therefore, I would strongly recommend you to seek a second opinion or...even a third (why not?), so you are 100% sure that what you have is either ALS or something that mimics it but that can be treated.

Best regards,

NH
 
go back to your doctor and let him see your improvements.
and hug your daughter with that working again arm!
 
You said "I could only whisper and talk very quietly" was your speech not slurred then? Over how long did your symptoms come and last? What medication and supplement, if any, were you on? The other thing that stood out for me was - "I could not close my fist without having to pry my fingers open and extreme pain" or have others experienced this?
 
Yes I also had slurred speech then. I could only talk quietly and not loud and throughout the course of the day my speech would be slurred. My speech still slurs some, it feels like my tongue is in the way and I have dry mouth but I can now yell and my speech isn't that big of a problem as before. Thank you for the response.
 
Sounds like you should be doing handsprings, jumping for joy! Best to you.
 
Did you ever get that second opinion? Curious as to what doctors have to say about your resolving symptoms. Glad to hear that it's going better!
 
Status
Not open for further replies.
Back
Top