Symptoms persisting progressing.

[jram303]

Hello all,
Since my last post I was sent to PT. the fasiculations and cramps have been getting worse and my hand dexterity is declining to where I was asked to take a leave of abscence from work. It started with dropping multiple bottles ( bartender) and then dropping glassware and cutting my hand quite badly.
I was told that the strength deficit was " not concerning" by my GP. When I went in for physiotherapy used a gauge to measure my grip strength. The average for a 32 year old man in the left hand is 127, mine was 46. I am unsure how this could be considered not concerning.
Whenever I do any sort of pushing motion or use my right hand the same muscle fasiculates non stop until I stop exertion. It is below my right elbow, inner triceps area. Also inner elbow pain. I've also developed uncontrolled arm shaking and ab shaking whenever I yawn. It's quite violent. I am still uncertain why I will not be given another EMG. Still have brisk reflexes. Really at a loss.
I lost my grandmother a week before my birthday unexpectedly this year. She was the only family I had. Definitely making things harder for me. At this point I don't know what to do.

 

[Roxanne]

Jram303.....I'm very new to all of this, but wanted to let you know I read your post and am sending warm thoughts.

 

[jram303]

Thank you very much. I am very sorry to see that you have had to come here. Nothing but strength and positive thoughts for you and your family as well! This disease is so awful. I am so so sorry for you. For everyone on here..

this has been about 2 years with no answers. First I was told Parkinson's. Then possibly ALS. Then " it's all in your head". I didn't know really anything about either before I went to see the neuro. But things now cannot be denied. I have no financial support and on paper, bartenders make no money. I was forced to quote my job composing music because of my inability to play. I don't know what I'm gonna do.

I just want answers. If this is ALS and they could have told me 2 years ago, that would have been two years that I could have spent with the most important person in my life.

 

[affected]

Live your life like every moment is precious - you don't need a terminal diagnosis to do that, or to complain you missed doing that because you didn't get a terminal diagnosis. I am sorry for the loss of your grandmother.

I'm really sorry you are still having issues, but after 2 years, this still just doesn't sound like ALS, but obviously something is wrong with your hand. If you are considering neurological involvement then a GP is not the right professional to order and interpret an EMG.

I don't know what else we can say or do here - I know you want support, but over the past 2 years we have lost so many members to ALS, and truly that's what we are here for. Doctors know when to order what tests and why - ask your doctor why a new EMG is not needed, you pay your doctor so ask as we would only presume it's because you have no symptoms that warrant an EMG.

All the best.

 

[jram303]

I don't mean to make an excuse for living. I live in another country from my grandmother before she passed. I appreciate your advice Tillie, as always. And everyone else's.

I live each day as best I can. Always have. But it's not a situation where " my muscles twitch, I think I have ALS." I started with spontaneous tremor in left thumb. Then many fasiculations. Two years later I have atrophy in my left foot and ankle. Atrophy above my right elbow where my tricep connects and whenever I extend that arm, and use any kind movement it fasiculates non stop. I've lost 3 kilos in 7 months and went from lifting 160 pounds kegs all day long to now not being able to do 10 push-ups because my right elbow gives. Had to give up my dream job because my hands don't work the same anymore.

Do I FEEL depressed? Absolutely. Do I FEEL weak? No. I just, am weak.. I was told by my doc " you should go to the mayo clinic." That's just not an option. I know this is support for ALS. And how many people have been lost. I've lost many friends from Cancer on the forum I am on there. And I do not want to take anything away from anyone. To anger anyone.

 

[Lkaibel]

I know the system is different in Canada, but it does sound to me as though you need another opinion. I am not saying you have ALS, but clearly something is going on and you need to get to the bottom of it.

I would think that ending up out of a job do to your weakness would trigger further medical investigation. Mind you a LOT of things cause these symtoms that have nothing whatsoever to do with ALS, and two years seems a long time frame indeed for various issues. Plenty of people here have been gone and buried in that time when it was ALS. I do think though that you need another opinion.

 

[jram303]

I agree 100% with you. It's quite a juxtaposition to have your work write your doctor a letter. I hope that this disability leave will spark some sort of hastiness. I've had to bow out of three jobs this year because of my physical inability to do them.

Minus the terrible cramping and muscles locking up I don't feel that much pain. It's become so so odd. When I try to lift something at the elbow, or grip hard with my opposing hand, it's not like I am struggling to do it; the only way I can explain it is it feels like I'm concentrating on trying to telepathically make someone else's hand do what I want it to do. I can do some things. But Mundane things that don't take any thought are just going the wayside. After skills like piano and guitar are nearly impossible.

 

[jram303]

I went in and saw my GP today. And they have put in a referral ( in conjunction with the general neuro I saw) to see an ALS specialist. I was asked to leave one of the bands I play in. We Were scheduled to play a 30 minute set a week ago and had to quit 10 minutes in because I kept dropping drum sticks. It was embersssing and also is getting to be sad. Music has been the biggest part of my whole life. I lost my job composing, and am on sick leave from bartending, and now am unable to play in some bands.

Is there any very slow progression pals around that have seen it take over two years to get to this point? I know the course is different for everyone, but at 2.5 years of noticeable symptoms, I would have thought I would be more disabled now. I recently lost my grandmother. And my grandfather this weekend ( Parkinson's dx) had a terrible fall getting out of his lift chair. He fractured his skull and is not doing well. They are the only family I have really. It is lowering my spirits even more so. Just at a loss of what to ask or do at this point.

 

[lgelb]

1) Agree w/ seeking another opinion. You should have a definitive dx.

2) For composition, you could use a physical or virtual keyboard in a music app like GarageBand or a more advanced app.

 

[Hank]

in my experience my hand began to atrophy along weakness.

 

[jram303]

Thanks very much for the advice. I have been using that for the passed while now. Through logic. I went from waited keys, to unweighted smaller keys, virtual now. I'm still trying every day. But it is getting quite hard

 

[jram303]

Hello everyone and happy holidays,

I received a letter in the mail yesterday that I am being sent to the neuromuscular clinic in February. I went to my GP and obtained a copy of my last clinical with a neuro. It stated that I have a positive brisk reflexes on my left leg as well as positive babinski? This is the leg that has atrophy in the digitorum brevis and showed some perineal nerve damage on NCV. It seems odd to me that this started with a twitch in my left thumb, then left leg. My left arm has stayed stable with minor issues, while my right arm really got hit. My index and thumb finger will lock up in towards my palm. And my arm gets so tired doing the smallest of things. As well as the inner elbow pain and fasiculations that seem to follow the ulnar nerve just below it.

Everything seems odd as far as things jumping around. But Dr Christopher White seems to be the best doc in Calgary. I read some pretty amazing reviews about him. Hopefully I can get some answers. Still have a gut feeling it is mnd.

 

[LizF]

I just would like to chime in to say that in Calgary, you have one of the best, if not THE best, ALS clinic in the country. And what you've read about Dr. White is correct. While I do not know him or the clinic personally, I have a dear friend who attended.
Very little chance misdiagnosis or missed "mimic" syndromes. I hope you are able to take some comfort in that, and all the best as you move forward with your appointments.

 

[jram303]

LizF,
Thank you very much for your kind words. I am so sorry to see that you are on here as well.This atypical presentation seems quite odd to me. It is still very presumptuous of me to say, but it seems like a lot of pieces are starting to come together here. I am definitely nervous. But am very happy to be able to be seen by Dr. White. I remember thinking stage 3 cancer was gonna be my big fight. But this has honestly ( whatever it is) been more taxing for the last two years than all of my chemotherapy put together.

 

[jram303]

I was curious if there was anyone with a slow progression, that took so long to get diagnosed? I'm at about 2 1/2 years of symptoms and they seem to be atypical. My right arm is the worst. But it started with fasics in my left thumb. They were so rapid it looked like a resting tremor. I do not have foot drop but my legs are quite shaky and weak. The bouncing around seems strange to me as far as limbs go.

Anyone with similar or atypical presentation?

Thanks everyone and happy New Years.