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veggiepete

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Diagnosis
08/2013
Country
Uk
State
East Midlands
City
lowestoft
Hi all..I'm writing for a little bit of strength and advice from you... bring you up to speed..diagnosed with a monomelic atrophy in left hand a few weeks ago after hand has been slowly wasting since last autumn, though i'm worried the neuro suspects als....c.p.k.test was 240 and had one e.m.g.. he said he wasn't too great with them and sent me for another e.m.g. with a colleague in the city...wasn't good from what i gathered..both asked if legs were ok..they are..He didn't say much other than wait and see..legs are fine but this last week been getting nerve things in back...popping/boiling texture under skin below the shoulder blades.and underneath triceps.and to me looks different...i can see my ribs more at the back with a couple of mirrors..i didn't want to ask my wife to look...i'm scared stiff and don't want to scare her as well...we've only been married 8months..and now about to be referred for IVF...i can't burst her bubble so i'm on here instead..
 

Tokahfang

Moderator emeritus
Joined
Jan 31, 2010
Messages
773
Diagnosis
07/2009
Country
US
State
VA
City
Richmond
Hi, Pete.

If you neuro says "wait and see", obviously we're not going to have a better course of action for you.

Here's the thing though, no matter how this all turns out and no matter what is going on neurologically under the hood, staring at your symptoms and trying to ferret them out will not help. People who do that end up seeing things like asymmetries that they've had all their lives and become obsessively fearful about them. Your mind starts to play major tricks on you. That fear, that anxiety, then produces symptoms of their own which actually makes it harder for the docs to do their thing, and to sort it all out.

But just like quitting a bad habit doesn't work by just stopping, you can't just stop fearing and sit around resisting the temptation to look at more parts of your body you've generally ignored until now. To get out of this spiral of fear you need to focus your attention outwards: into your work, your hobbies, making your wife feel like the luckiest lady in the world, volunteering, making an awesome nursery for that baby you all are hoping for, whatever it is. You have to push you mind away from thinking about medical stuff and focus intentionally on other things.

That's easier said than done, but the deeper you let this fear go, the harder it will get. So get to it, and then address this medical stuff again when your next doctor appointment comes up. And if that appointment is everything you fear, at least you will have enjoyed and really lived the time in between.
 

veggiepete

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Messages
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Diagnosis
08/2013
Country
Uk
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City
lowestoft
Thank you Beky..Of course you are right... and whatever will be will be.. posting here and your reply has chilled me out a bit as wife knows i'm worried about something.. bless ya for responding..:)
 

olly

Extremely helpful member
Joined
Jan 10, 2008
Messages
2,732
Reason
PALS
Diagnosis
11/2007
Country
uk
State
uk
City
uk
Hi pete.
I agree with beky,i know its hard to wait in limbo land(we have all been there)but unfortunatly only time can tell.
We all tend to relate to each other here (obviously)and feel we can be more honest with our feelings then we can with family ect.........your not alone with that so dont feel guilty.
Wish we could help more,please stick around and let us know how you are doing.
 

veggiepete

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Joined
Jun 6, 2013
Messages
102
Reason
Other
Diagnosis
08/2013
Country
Uk
State
East Midlands
City
lowestoft
Thank you Olly..i shall be in touch when i know more..and i'll try not to worry for now..best wishes to you all..Pete
 

paul71

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Joined
Jan 9, 2013
Messages
86
Country
US
State
WI
City
W
I am in limbo as well. I wear long sleeves whenever possible so that I don't notice my arms and start focusing on symptoms. I also refuse to look at recent pictures of myself. Whenever I do this, a good day turns into a bad day, at least for a while.

I have had a spinal tap, 4 MRIs, 6 EMGs (yes that's not a typo), 2 skin biopsies, and a muscle biopsy. I am waiting for the results of the biopsy. In the meantime, I feel like I've done all that I can do. It is what it is, even if it doesn't have a name on it yet.
 

Danielson

Active member
Joined
May 28, 2013
Messages
87
Reason
Learn about ALS
Country
US
State
Illinois
City
Illinois
I can relate. So far I have not been obsessive about looking for asymmetry or atrophy but my wife tells me I'm getting too skinny, which is unsettling.

My arms are still very weak and the fasciculations are everywhere. Some mild weakness was noted in my physical exam in my right arm. EMG had some remarks that I don't understand but was stated as normal. I had no fasciculations during the EMG. I hope ALS would have shown up anyway? (Can anyone verify this?).

The hope is my herniated discs are the cause of my arm weakness, but no clue why I am fasciculating everywhere. I suspect it's from a long term of inactivity, but the irrational stuff still creeps in.

I have no diagnosis, but definite cord impingement in C-5 and C-6 and the neurologist has said he's 99% sure it is not ALS. I guess it doesn't get better than that.

Luck to all.
 

JTorm

Active member
Joined
Jun 7, 2013
Messages
39
Reason
Learn about ALS
Country
PTY
State
Panama
City
Panama
Limbo is getting me crazy, yet i try to manage it somehow....

Wrote a week ago about my emg findings.. (S1 root irritation bilateral which caused denervation calf bilateral and carpal and cubital bilateral) and the neurophysiologists who conducted the studies concluded i have sciatica because of the s1 thing and well the weakness and mild pain in arms because of those syndromes stated above...

ALSO they want me to see a Psychiatrist.... (they think i'm too obsessed with ALS)... as i think i still can have it because they studied all body, legs, arms, paraspinal area, trapezius.. but not the bulbar (tongue i think).... as i'm not having problems with my tongue...besides sometimes, since been anxious my entire life, gettin throat tighten or have slurred speech with anxiety...

NOW my protein serum (blood test) says that i have some sort of polyclonal gammophaty... gamma region elevated which can be caused (autoinmune disorders: lupus, arthritis, Sjogrens, MG; infections: viral, fungal, hepatitis; some malignancy: lymphomas, cancer, etc. Hematologist during the clinical exam said no lymph swollen...so perhaps no lymphomas... YET i have to do other blood tests to see what it is!

Life is hard, no doubt about it... but you know what?... i'm learning slowly to go with the flow... a day at a time..

Have a wonderful day guys/gals,

John Torm
 

veggiepete

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Jun 6, 2013
Messages
102
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Other
Diagnosis
08/2013
Country
Uk
State
East Midlands
City
lowestoft
appt through the post..mid Oct....fasciculations are annoying, weakness worrying..have to wear long sleeves for the summer and try to ignore things..best wishes to you all..:)
 

Tiber2011

Member
Joined
Jun 21, 2013
Messages
21
Reason
Learn about ALS
Country
US
State
Il
City
Chicago
October is far....can't you get an earlier appointment?
 

pearshoot

Senior member
Joined
Feb 6, 2011
Messages
633
Reason
PALS
Diagnosis
02/2010
Country
US
State
mo
City
nixa
remember uk is wonderful government health care. when it becomes fully implemented in us we can expect same service in us. gp saw me in sept, neuro saw me in oct, gp in oct, hand surgeon in dec, back to neuro in dec, neuro 2 in jan, neuro 3 in feb get that kind of service from gov health
 

veggiepete

Distinguished member
Joined
Jun 6, 2013
Messages
102
Reason
Other
Diagnosis
08/2013
Country
Uk
State
East Midlands
City
lowestoft
Our Nhs has a lot of problems i admit..but they can move their arses if the need arises..having the appt sooner isn't going to make a get deal of odds..am noticing i'm becoming weaker in my right side, around the garden etc,painting above head height and holding the strimmer. i'm already taking things very slow because of a back fusion which didn't go too well in mar 12. Reading lots of posts i am noticing a possible link between back surgery and als..
 
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