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Started again - 2 years update

PostPosted: September 25th, 2015, 3:29 am
by Pascal35
Hi Everyone,

Sorry for the long post but i will try to describe the situation in detail.
I haven't posted for a while but the truth is that over the past 1,5 month my fear got enormous again and i started visiting again neurologists and having EMGs performed.
Everything "NEW" started with a strange coordination/stiffness issue on my right hand and especially with the thumb and index finger.
My right dominant thumb is having a tremor when i slightly extend it and seems slightly weaker than the left in the extension move.
This tremor exist for over 2 years so i know about it and have checked it in the past. The weakness could be explained by the radial nerve injury i had years ago in a humeral fracture but I'm not sure if i had this weakness/stiffness in the past.
My right index finger is much thicker than the left and i think this makes it stiffer... Its not weaker so i really don't know if it was always like that.

Anyway i went to perform detailed EMG in my right arm and we included all the possible muscles of the area and all seemed fine. I also visited a few Neurologists and after detailed examination they concluded that there was nothing wrong.
Im still scared and in addition i woke up this morning with a hot spot twitching on my right shoulder that doesn't stop. Maybe because of stress...? Maybe because of some weight lifting i did yesterday...?
The point is that 2 years after this story started it seems that i am exactly at the same spot.
Would love to have your comments as it looks that I'm really going backwards again.

PS. Pascal35 is now 37 heading to 38 and still suffering

Re: Started again - 2 years update

PostPosted: September 25th, 2015, 8:31 am
by guitarguy11
Hang in there. I started going backwards over the summer - late June to July - after having a period of one noticeable hot spot on my elbow that lasted months and either I had trained myself to ignore the other twitches (more likely) or they stopped (less likely). Incidentally, my twitches got worse right after I came back to this site to post a one year update and I read physerv's post (not his fault - he needed to write that post). I don't think that is a coincidence. I have visited a new neuro and he has reassured me, but he is watching me too. And I have an appointment with my old neuro in a couple of weeks. So, I know what it is like to backslide - and when I backslid this time - it came back worse than it was before. I think there is possibly something wrong with us that the docs don't understand that causes a certain base line (harmless) twitching and that anxiety, stress and tension inflames it.

And remember that we are not symmetrical. I was talking yesterday to my 14 year old son who was complaining about one of his arms hurting and that it looked different than the other. So, there you go - he is not symmetrical either and he is a strong youngster!

You have been twitching for long enough that MND is highly, highly unlikely. You are not alone on back sliding. Sometimes I hate myself for doing this to myself!

Re: Started again - 2 years update

PostPosted: September 25th, 2015, 9:09 am
by Xina535
Ditto to GuitarGuy. Same here. You are at 2 years, time is on your side. All of the cases I've heard about where twitching started before diagnosis, it was within a year. I have to repeat that to myself, many times (I am at 2 years, 3 months). One phrase I find some comfort in is "this too shall pass", because I look at all of the things that happened and scared me before, and then it stopped (like slurring, excess saliva, left leg lameness, falling down stairs, etc...). So this is probably one more thing to add to the list to look at later.

Another thing that makes me feel somewhat better is to look at my family, and surroundings. My mom survived breast cancer stage 3 and the death of her 24 year old son. My dad is 64 and is a tough mother (survived Vietnam, lost his son, etc). My brother, before he died, was big and strong and built. My grandmother just celebrated her 95th birthday, and she has little to NO issues, as fit as a whistle. And then I think, "Man, I am from this family of strong, long-living people, I can handle this." - so it helps me build courage and give myself a little more credit. Little things like that help me through each day, during a backslide. I think of my big brother's spirit looking over me all strong and saying to me, "You got this."

Maybe you have thoughts, people, spirits?, comfort zones, etc., that does you good also?
Hang in there.

Re: Started again - 2 years update

PostPosted: September 25th, 2015, 9:23 am
by leroyb
Two year mark this week. I become more convinced I have it rather than less as time goes by and I still have
no clinical weakness.

Re: Started again - 2 years update

PostPosted: September 25th, 2015, 1:26 pm
by RIno468
Hey Pascal

Sorry you are on the downslide.

I am on a good one too so I totally understand.

You take so long to get up over the hump of thinking you have a dreaded disease and all it takes is one pop, one twitch in a different spot or feel a different way and you get set right back to where you are.

BFS is more challenging mentally than it is physically.

Ive been twitching for a year - I was not even diagnosed with BFS - but the dr's couldn't find anything wrong because im strong!

Anyway - good luck to you - keep posting if it makes you feel better - or stop posting if it makes you feel better.

Re: Started again - 2 years update

PostPosted: September 25th, 2015, 6:47 pm
by veryworried123
I agree

Hang in there. We all go through this. I'm going through it because my hand won't stop twitching. And it's right in that area we hate twitching between the he thumb and finger. I think about it a lot. Start analyzing dents that were never there before

Just remember all the facts and read some great posts here and remember that nothing has really changed
Your just "twitching"


Re: Started again - 2 years update

PostPosted: September 26th, 2015, 12:11 am
by Pascal35
Hi Guys and thank you all for your posts.
My fear has developed... Its not only twitching. Its dexterity and coordination on my right hand as i described in detail.
Doctors can't find anything wrong and EMGs are clean but truthfully i feel that something is wrong.
Had ultrasound (showed some slight tendonitis), EMGs, Neurological tests - i don't know what else to check.

It should be reassuring that the majority of us have a hypochondriac background and/or psychological issues (OCD etc) but its so difficult to let this fear go especially when strange things happen to our bodies.
The whole day i am checking the strength and detail moves of my right hand.. It's ridiculous

Re: Started again - 2 years update

PostPosted: September 26th, 2015, 7:33 am
by Xina535
If anything, Pascal, please know that we understand you and you are not alone. You say it's rediculous, yes, we all know this, and we are being rediculous with you. *hugs*

Sorry about the coordination and dexterity. Same here. One thing I've done is put my hand in a wrap so that I am forced to 1) not look at it 2) I can't do any finger strength testing 3) it helps me to not feel the weak and dexterity issues and 4) if any of the dexterity or "fatigue" is due to strength testing or overuse, the wrap helps it to rest.
When I do wrap it, I keep it wrapped for a few days at a time, only removing for shower, etc. And, I don't know if it is good to wrap it, but it helps me get through the darkness.

Re: Started again - 2 years update

PostPosted: September 28th, 2015, 4:33 pm
by veryworried123
honestly you just need to stop

we all have this

just find something to keep yourself busy and keep your mind off all this


Re: Started again - 2 years update

PostPosted: September 29th, 2015, 10:44 pm
by Pascal35
Thanks veryworried for your comments.

I try to forget but unfortunately is not easy.
It is obvious that my right thumb (dominant) is weaker than the left in extension and abduction.
This could be because of my old radial injury from a humeral shaft fracture but on the other side why haven't i noticed it over the last 2 years that I'm searching so much my whole body and strength...?
Gladly i have clean EMGs on my arm and hand. This is the only things that keeps me relatively calm.

Re: Started again - 2 years update

PostPosted: September 30th, 2015, 1:12 am
by Pascal35
And in a few hours time i will have another EMG in both arms.
This time with a totally new doctor who doesn't know anything about my condition.
Im so scared like I'm doing EMG for the first time.
I hope i will get relieved after that one with good news...
Will keep you posted

Re: Started again - 2 years update

PostPosted: October 13th, 2015, 3:47 pm
by Pascal35
Hi Everyone,

Just a quick update to everyone who showed interest on my issues.
NCV showed my problem in the radial nerve which is caused by an old arm injury...EMG gladly showed nothing pathological in all the muscles of my right arm.
I still have this strange feeling in the hand especially when I'm under stress. Its like the hand its not stable. I read a bit and found that these symptoms might be "Dystonia" so I'm really trying to find out whats going on.
Also the fingertips of my right hand (especially thumb and index) feel strange. Its like the nerves are damaged and don't have the same feeling with the left one.
Im happy with the outcome but since i still have the symptoms i obviously can't get it out of my mind.
In addition over the past 7-10 days the twitching has increased. Maybe stress...

Any ideas?