Old 08-31-2017, 11:06 PM #16 (permalink)
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Default Re: Concerned...

Tracy,
I am trying... and good mindset is when I have the twitches in small intensity. When I have times and I see them like crazy and powerful spasms, mild cramps and now other associated symptoms I'm getting a storm in my mind. Having something that I don't know is so frustrsring. As I can make plans only for tomorrow

Today I also had occasional twitches all over the places. However, my calves continuously. At least If I can confirm the radiculopathy would be beneficial.

But when they twitch like crazy It is so convincing that I have one form of MND. And if it is, hope it will be fatal quickly... I still want to die with dignity

Thanks...
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Old 09-01-2017, 07:55 AM #17 (permalink)
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Default Re: Concerned...

Please get some help You are letting this consume your life and it sounds like you are probably causing your mother pain too. I am sure this is hurting her.

ALS took your dad and it is very sad. You are now letting it take you too only this time it is treatable because it is your fear. You owe it to yourself your family and to your dad

The MRI is not going to help you feel better. Whatever it shows your mind will twist it The only way to get better is to do the hard work of addressing your anxiety over this.
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Old 09-01-2017, 11:51 AM #18 (permalink)
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Default Re: Concerned...

Thank you Nikki. I will follow up with my main neurologist in 3 or 4 days from now as he wanted. But he didn't wanted to follow up due to a neuro muscilar disease as more as my mental state. Currently I am on xanax 0.25x4/day as needed but If I continue lime this he suggested I might start on SSRI if I can't control.

Based on the follow up I will work with him to see If I need a psychyatrist or psychologyst, meditation or something...

Thabks again for all your time and effor Nikky
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Old 09-01-2017, 04:18 PM #19 (permalink)
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Default Re: Concerned...

Hi MIHU I believe I am the one being referenced regarding previously having a radiculopathy vs MND on an EMG. Let me briefly give you some advice:

I have had the following:

1. Reassurance from this board
2. A very experienced physiatrist tell me that my EMG findings are 99.5% not indicative of MND
3. A Neuro with a focus on neuro physiology and member of academy of neuromuscular and emg medicine tell me that she agrees with 99.5 and would go higher than that if my CK levels were normal..which they were (recently tested)...
4. The director of a major university MND clinic (neurologist) tell me my results do not suggest early MND etc..
5. A completely normal physical exam by a neuromuscular specialist at Mass General Hospital who also said his suspicion for MND was exceedingly low and the chances of my EMG results turning into MND was next to nothing.

Here's the thing...they cannot tell you or I or anyone else that we will never get MND or any other horrible disease. But if you write out your story in the 3rd person you'll see that you likely have no reason to be concerned. You need to find a way to deal with the response to your SYMPTOMS...this is the trigger. Because if you don't, while your anxiety might fade over time, what happens when you notice a twitch next year? or 3 years from now.

I see a psychologist now and am grateful for getting that advice here. Do I still think about it? Sure..Do I still have twitches...sure? Do I occasionally do a strength test...sure, but much more infrequently.

Do I wish I had a cleaner EMG? Of course...but a mildly abnormal EMG couple with what essentially is as close to 100% medical reassurance as you can get is nothing to worry about all things considered. Think of how many people would want to be in that position vs the alternative.

You've got to find a way to deal with the response to your (non-specific) symptoms. Twitching may continue for awhile...your ability to control your anxiety response to that is key because if you can't it doesn't matter what anyone tells you just like people who have clean EMG"s still stress over "someone missing a muscle" etc.

I posted my report in my thread if you want to read it. You'll see that, at least in my case, we worry much more about what appears on an EMG than a qualified doctor does because they know the science behind the results...some people read about a couple mild abnormalities and they freak out.

How about this...MGH doesn't even test the feet and that's where my other muscle was with the abnormality. Guess what muscles take the most beating? Your back, your calves, your feet..etc..

Please, for your own good, get help dealing with your response to your (non-specific) symptoms.
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Old 09-01-2017, 04:54 PM #20 (permalink)
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Default Re: Concerned...

Thanks. It is super reassuring. And I will start dealing with my anxiety and try to get my life back. I will still wait for the MRI which may confirm the radiculopathy and hopefully this will be reassuring. However , I should trust the doctors when all of them mentioned "No evidence of MND". I should just take this.

Thabk you again for your time and reassurance. I will definetly start dealing with this and get my life back to normal. Today is a gift. Regarding to the future we never know ..If my Dad was not in the equation probably I wouldn't be so concerned...
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Old 09-01-2017, 05:15 PM #21 (permalink)
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Default Re: Concerned...

Don't be super surprised if your MRI doesn't definitely show something...Sometimes, depending on how mild it is, an MRI might not show (in the lumbar area anyways) because you are laying flat. In some cases the issue can be present when standing or sitting so the MRI might not show what you are looking for but let the doctor interpret that. If you're anxious over your symptoms no test..likely not even an EMG, is going to solve your issue long term..which is anxious response to non-specific symptoms.
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Old 09-01-2017, 05:25 PM #22 (permalink)
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Default Re: Concerned...

Yep. I will have an MRI and I do have back pain around L5S1 in certain positions. I am working as a Software Engineer since 2004 and imagine a life only sitting on a chiar about 13 hrs /day. It's certainly something there. Of course I won't be able so rely fully on the MRI but if it shows something It will give me the peace of mind.

Furthermore, forgot to mention. The doctor who did the EMG , after he said no MND he also metioned the following :

"Your twitches may stop or not. And if they don't they can stay there for the rest of your life. They will just be there, benign...so you have to get use with free massage"
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Old 09-01-2017, 06:21 PM #23 (permalink)
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Default Re: Concerned...

Mod note: The usual forum rules require folks who have not been diagnosed to not post other than on their own threads. Jaxon's post is informative and reaffirms the advice and steps they took to receive appropriate medical help so we'll keep it here.
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Old 09-01-2017, 06:30 PM #24 (permalink)
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Default Re: Concerned...

Hey Jaxson
THANK YOU. Although I agree with the "usual forum rules", I think Shiftkicker made the right call.
It won't stop the DIHALS, but maybe it will help.

Angie
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Old 09-01-2017, 06:33 PM #25 (permalink)
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Default Re: Concerned...

Thank you @Angie and @Shiftkicker for being subjective. Right, Jaxon's post was indeed a huge level of reassurance for me.
I will keep this list updated with only objective things and I can reassure you that I will not ask the same question all over again.

Thanks again everybody for taking your time to deal with so many anxious people here...
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Old 09-02-2017, 12:50 AM #26 (permalink)
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Default Re: Concerned...

Usually many carley horses appears after long driving. And the fasciculations started 3 days after a llong drive to las vegas and la back and forth. I am trying to make the tie between driving and the presentation. There is certainly something. No MND but I am pretty sure there's something wrong in my spine.

I will post the MRI results and I will do another EMG and report here next week. At least for the peace of mind of others which are probably reding this thread.

Thanks
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Old 09-02-2017, 11:38 AM #27 (permalink)
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Default Re: Concerned...

And also. The doctor which operated the EMG said to me : "You do not have ALS/MND right now...to be clear".

I know doctors are proffesional and nobody can predict the future but shouldnI take it proffesionally or should I take it that this might be the beginning of any form of MND? This morning I woke up I started again to watch my twitches and got scared again.

If I do another EMG next week, let's say after a couple of weeks it should show something new or should I wait a little more?

At least I want to kbow how to plan...
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Old 09-02-2017, 11:49 AM #28 (permalink)
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Default Re: Concerned...

Look you are really out of control here. Again please get help.

It is not unusual for doctors to make that right now statement. They are afraid of being sued if you get MND in 20 years No one is immune from getting it sometime but you are far more likely to get cancer, heart disease or diabetes.

Getting another EMG right away is not appropriate. My clinic says usually a 6 month interval if they are following something THEY are worried about. Occasionally 3 months

What happened to your promise in post 25?

Please stop this. This is not helping you You need to leave and get anxiety help

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Old 09-02-2017, 12:07 PM #29 (permalink)
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Default Re: Concerned...

Doctor didn't seem concerned and he mentioned that further EMG's wont be necessary. An MRI might. Whst he pointed on is SSRI and eventually tonic water. I am waiting for the EMG report paper which describes exactly and share it. If I will not get it via post I'll call the office. Yes If is anxiety I am still in the process of fighthing with myself. As time passes most of the anxiety is relieved. As a researcher mentioned that the time is the main discriminator
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Old 09-02-2017, 01:00 PM #30 (permalink)
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Default Re: Concerned...

Since it is really clear you don't have ALS, it seems appropriate that you leave this website instead of taking up the time of people who don't have a lot of it left.
No need to respond.
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