Symptoms and Questions

[GoGreen123]

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.

 

[kiara]

As you said the weakness in als is caused by the loss of motor neurons so is not possible to get better if you have als. The symptoms you were experiencing are very similar to als symptoms but a dyanosis of als cannot be based only on symptoms. Did you have emg done? Was the emg showing signs of als? Anyway if I were you I would look for a second opinion couse it's almost impossible for an als patient to recover.

 

[GoGreen123]

Thank you for responding. I was diagnosed with ALS by a neurologist. Have you ever heard of someone being positively diagnosed and having these symptoms go away significantly and improving without any treatment? Everything i listed above has happened. I am really curious me would appreciate any insight on this situation. Does anyone else have any information?

Thank you for your help and response.

 

[GoGreen123]

Thank you for your response. Yes, I have been diagnosed with ALS by a neurologist. Have oh ever heard of symptoms reversing and significantly improving? I have not with everything I read. Do you have any more info or any more help? That would be great and if anyone else does. Thanks again.

Thank you for your help.

 

[kiara]

I suggest to go to your neuro explaining the situation, maybe you had something that mimic als and so now you're improving.I've never heard of people with als that improve like you're doing.

 

[GoGreen123]

I suggest to go to your neuro explaining the situation, maybe you had something that mimic als and so now you're improving.I've never heard of people with als that improve like you're doing.

Thank you for your response. Any idea on what might be goin on? Any ideas at all?

Thank you again I appreciate everything.

 

[notme]

How was your ALS determined?

Was an EMG done at that time? It sounds like you were given a bad diagnosed. Something else was going on--or what you were experiencing was muscle fatigue, which made things hard, but not impossible, which could mean that ALS is still accurate.

At the time when you went--could you NOT do things or were they just difficult from weakness? Or unable to do them because of UMN spasticity? Do you have any atrophy? What I mean is that once some muscle is dead from ALS--it's dead. Period. But--muscle fatigue can wax and wane before -- in early ALS the nerves try to compensate--but eventually can't. Denervationn and renervation are seen on the EMG.

Other nerve conditions can slowly heal themselves at times. Your EMG and NCV are important. It sounds like you were having spasms in your hand--like weakness, it can wax and wane. Some days better than others--until the muscle dies--then it just doesn't get better in ALS.

Spasticity can cause the muscles to tighten and the fingers to curl--not all the time necessarily. I'd certainly go back for a second opinion with an ALS neuromuscular doc.

 

[kiara]

It could be a lot of things: cervical problems, a myopathy, an infection, a metabolic problem......the only thing to do is referring to a neuro again

 

[GoGreen123]

Thank you all for responding. I really appreciate all the help you have given. Here are some more answers to your questions.

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.

Thanks again and any response would be great.

 

[pearshoot]

read about case of ms and individual quit diet soda and recovered. have you quit diet soda (aspartame)

 

[GoGreen123]

I do not drink diet soda or have anything with aspertine in it. Does anyone else have any helpful info? Everything that has been listed is happening. Thank you for all your help.

 

[notme]

Dear, rather than five threads asking the same thing--why don't you ask the doctor.

If it IS ALS--I gave some answers as to why it's possible you seem better--less spasticity makes more use perhaps? Maybe you were in mostly UMN issues to begin with?

You don't really tell us if you've had any treatment---what meds you take. But, if you've lost function completely and gotten it BACK=-it can't be ALS I don't think.

 

[notme]

HI Again

So, are you going back to the doc?

Several of us have commented on the many threads---but we can't really tell you what's going on. Weakness and muscle loss are different.

Perhaps you were having muscle weakness before--and are having less spasticity now which is making your limbs work better.

OR--you were misdiagnosed. Pretty simple. Go back to the neuro.