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Author Topic: Fear of MS or ALS...? I am in panic  (Read 287 times)

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Offline Panos1978

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Fear of MS or ALS...? I am in panic
« on: December 01, 2013, 03:39:03 PM »
Hi Everyone,

My story is so simple but in my head everything is so scary and complicated...
Thank you in advance for taking the time to read it.
I am male 35 years old.
One month ago i brought in an issue with an MRI i made 2 years ago that showed a few small non specific hyperintensities - I repeated the MRI twice and every doctor re-assured me that nothing is wrong. I want to note that at this point i have no symptoms.
I must say that there was not an initial MS symptom, i just made the MRI in private (without doctors advice) purely because of migraine and fear.
During this month i visited around 10 Neurologists, had VEPs and all the possible potentials, spent much money.
I had huge difficulty to cope with my work and with my home responsibilities (husband and father of a 9 month son).
Finally once i was convinced that i must take it easy with the possibility of MS - i started to have fasciculations in several parts of my body and especially in my right bicep.
This one was continuous for almost 2 days. Also i felt some strange muscle tremors when i made efforts in my neck and hands. I translated that as a "muscle weakness" due to possible atrophy.
Googled and found this ALS neurological disease... I was really terrified and in panic. I arranged immediately an EMG.
Went yesterday to the doctors office and EMG result was normal.
The fasciculation in the bicep was present during the EMG and still all looked normal...
Magically today there is no fasciculation.
Instead of relaxing and forgetting about it i still make researches - i now have fully focused on my tongue and check for symptoms - Went just to the ER Neurologist and asked him to check if there is weakness and atrophy in my sternocleidomastoid muscle (because of the tremors i mentioned earlier) and gladly he mentioned all is fine. He said that since i had a normal EMG i should not worry because some of the muscles that were checked would have shown something.
I am afraid that maybe its still the start of this ALS and EMG couldnt catch it yet...
I am terrified about the future and every morning i find it really hard to get out of bed. I am very depressed, scared and wish that all of these issues are simply in my head and there is nothing serious with my health.
Thank you for taking the time - It really helps to share my story
 
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Offline utahguy058

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Re: Fear of MS or ALS...? I am in panic
« Reply #1 on: December 01, 2013, 11:17:22 PM »
I don't want to downplay your panic at all. I feel your pain beyond words. I have been on a health anxiety kick for 3 months now and a numb foot started it all and it has cascaded into every symptom you could dream of. I was sure it had to be MS. I had MRI's of Brain and Cervical spine. Nothing showed up. I finally let the MS fear go, but then started getting twitching in my calves and was worried it was ALS. I can empathize greatly. I have been to many doctors and each tell me different things. However I keep getting that I have nothing to worry about and some tell me it is anxiety, and I think there is no way that it is anxiety. I know that we are here to support one another and to know that we are not alone. Know you are not alone and there is a huge community here for you. I would trust all the doctors who have told you that you do not have MS or ALS to worry about. Two days of twitches in your bicep is not something to worry about in ALS. From what I understand that it tends to start more in hands and that you are experiencing weakness. I think you have ZERO concern for MS or ALS, I have learned a lot in this three months and what you are describing is nothing like any case of MS or ALS I have heard of or to those who actually have the illness have told me. Tell yourself that you are dealing with the illness of anxiety and that is what you need to face to make yourself the best father possible. I feel beyond words for you and hope that you get comfort soon.
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Offline Panos1978

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Re: Fear of MS or ALS...? I am in panic
« Reply #2 on: December 02, 2013, 12:30:35 AM »
Thank you for your post.
I do believe that for ALS a safe test is an EMG.
Since twitches exist...if these twitches are an actual ALS symptom then the EMG would have picked up other abnormalities. At least this is what i researched and doctors said.
As i am researching i find so many terrible diseases and this makes my anxiety worse
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Offline utahguy058

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Re: Fear of MS or ALS...? I am in panic
« Reply #3 on: December 02, 2013, 01:20:23 AM »
Easier said than done, because I think I am the worst culprit of googling symptoms. But ask your doctors what could be causing it, not the internet. The internet took me to a disease that has a 3 in a million chance of happening. I was sure that I had to have had it. Instead of trying to find the one in a billion disease try to ask your doctor what it could be, and believe that anxiety can cause twitching.
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Offline Panos1978

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Re: Fear of MS or ALS...? I am in panic
« Reply #4 on: December 02, 2013, 06:42:23 AM »
Later today I'm heading to a new neurologist to make a new EMG in different muscles.
Let's hope that this will clear the whole picture and will let me to finally get away of all those fears.
I need to find my peace.
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Offline greend

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Re: Fear of MS or ALS...? I am in panic
« Reply #5 on: December 02, 2013, 08:30:47 AM »
I am sorry you are in such a state of distress. That feeling is truly awful.  But, when I read your post I can see at this point no amount of reassurance is going to make you feel better.  That is the problem when you have health anxiety.  Nothing a doctor says or a test shows will make you feel better, so I do think that having another EMG could be a huge waste of your money. 10 neurologists have said you are OK.

It sounds like you should start working on your anxiety.  Have you thought about paying a therapist rather than for another test?  Some type of counselling along with reading self help books will probably help to put you on the road to recovery.  A test whether it's an MRi or and EMG only makes you feel OK for a short period of time and then the unhealthy thinking starts up again. 

For your own sake, start dealing with your anxiety.  You don't have ALS!

Feel well.
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Offline Panos1978

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Re: Fear of MS or ALS...? I am in panic
« Reply #6 on: December 03, 2013, 02:36:07 AM »
Thanks for your comments...
What you are proposing is the ideal. I would recommend the same to someone else too but unfortunately i am not able or strong enough to deal with it for myself.
At any case i went last night for the EMG and this time i felt very comfortable with this doctor. He is a very good expert. He gave me the clearance about everything i was worried about and now i hope that i can relax.
At any case i will look for therapy and i hope that this can help me for the future. It's not easy.

Regards
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