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jcharlotte

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Hello to everyone in this forum and thank you in advance if you take the time to answer this message.

I am 43 years old.

My mother passed away from ALS at age 57.

About three weeks ago I developed overall stiffness in my hands and fingers, like they felt they had glue in them when opening and closing them, but no pain. The fingers and hands wanted to "curl up" on their own or into a fist and felt stiff when flexing them. I also had some forearm fatigue. I also notice it in the thumbs when trying to text.

The most noteable symptom was and still is, a decreasing ability to type at work. The finers just don't seem to do what I want them to do. The sensations when trying to type is similar to if someone squeezed your lower forearm to make your fingers curl, but again no pain, just stiffness and lack of dexterity. They seem to almost lock in place when I'm trying to type. This is in both hands, maybe a bit more in the right but not a lot. I can roll my fingers up and down fine if I put them out straight on the table, and I don't seem to have a noticeable strength loss in terms of opening things. But when I try to type they just dont move to the keys like I want or ask them to do.

Other symptoms which may or may not be related to this (could by from worry/anxiety, other issues, etc) include:

- Achiness in the upper gluteal region and around a bit into the hips
-Mild weight loss (about 4 pounds in 3 weeks)
- Mild and infreqent burning sensation in the shin/top of the feet
- Some stiffness in upper back/trapezius region
- Feeling of weakness generally in the legs - but this is similar to what one might feel if under intense stress from facing something similar to this

The symptoms have seemed to progress over the three week period.

Initial bloodwor at my doctor came back fine and I've been referred to a neurologist. So it seems I am starting down the same road as all of you who either end up having ALS or don't

If anyone has an opinion one way or another I would appreciate it.

Good luck to all of you battling this awful disease. What I went through in helping my mom gave me an all to accurate picture of what you are going through.
 

jcharlotte

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I wanted to add on just a bit more detail of how my hands/fingers have been affected:

- Thumbs when texting or typing and fingers feel like they are moving in slow motion. The range of motion, speed, dexterity and just ability to type or do what i ask them to have all changed. Almost like the fingers and thumbs have slowed to half speed and the speed will eventaully slow until they can't move

- When walking and standing up both legs equally feel unstable and not very strong. They tend to straighten as i walk

- If I look back three months I have lost about 10 pounds, and three notches on the belt.

Again thanks to anyone willing to express an opinion.

I completely realize these symptoms are not as significant or advanced like may who are already diganosed or further along. So my worries are that these are early signs, and everything I read points to this since my sypmtoms are both upper and lower.
 

Dusty7

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Your symptoms do not sound like ALS to me, but check with the neurologist. There are a lot of other nerve issues that can affect the hands and fingers and many are treatable.
 

MaxEidswick

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>but check with the neurologist

make sure it is an ALS neurologist, either in a clinic, uni, or trained unde one -- the mda or alsa should be able to help find one ...
 

jcharlotte

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MaxEidswick - Just curious if your opinion is the same as Dusty7 that it is most likely a different kind of nerve issue?
 

MaxEidswick

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>MaxEidswick - Just curious if your opinion is the same as Dusty7 that it is most likely a different kind of nerve issue?

it is never ALS until it is nothing else (except PLS :)).

Put everything else out of your head and see an ALS neuro. Focus your energy on helping someone else out. Do the ice bucket challenge .. consider yourself challenged! send the video to max at eidswick dot com ...
 

jcharlotte

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Thank you. I have done the ice bucket challenge and gotten many more involved. Have sponsored teams in the past for ALS walks and done pretty well at raising funds. Will continue to do so. I will send the video. Your answer was not very reassuring:) Forgot to mention I have an 8 year son. I grew up in Spring, Tx and drove through Tomball many times.
 

MaxEidswick

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>I have done the ice bucket challenge and gotten many more involved. Have sponsored teams in the past for ALS walks and done pretty well at raising funds. Will continue to do s

great, thanks -- your support is what will ultimately defeat this monster!


>Your answer was not very reassuring

not meant that way. I like to think the odds are with you until they are not; however iiwii.


>Forgot to mention I have an 8 year son.

mine was 8 yesterday, now married, daughter, studying engineering. recently got the following note from him:

------ snip

Subject: What I learned form my dad.

The things I have learned from my dad that I have taken to heart:

Take life as you would a putt, slow and sure, never let anyone rush you.

Prior Planning Prevents Piss Poor Performance

RTFM

It is easier to measure twice and cut once than to do it twice

If it was easy everyone would do it

Engineering is the foundation to any career

It is easier to defend your answer when you show your work

Lawyers are the parasites of the world

Quality

The powers of 2

The best things in life will never come from little green pieces of paper

Hard work

Do it right the first time.

If you screwed up the first time, figure out what you did wrong and learn from it.


I keep these lessons with me and will pass them on to my children when they become ready to learn them. You taught me a lot and I could never ask for a better father. I love you.

--- end snip



>I grew up in Spring, Tx and drove through Tomball many times.

we just moved to a small single story in Pinehurst just south of magnolia ...

great for running the dogs :)

running dogs/girls:
MVI 0020 - YouTube



.
 

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jcharlotte

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That's a fantastic note from your son.

I had plans to have another child. Going to put that on hold for a bit.

Thank you for taking the time to respond. I wish there was a way out of this mess for you and everyone else (potentially me too). I was hoping (but knew it wouldn't happen) for a response from someone that would say something like "you don't have ALS get off this board you are ridiculous". Lol. But from doing the same online research as everyone else I know that the disease could very easily present itself like it is with me.

Have a great afternoon.
 

jcharlotte

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And thanks for those pictures. Huge dog person. Made my day.
 

MaxEidswick

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>That's a fantastic note from your son.

thanks, see the edited note :)
 

affected

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jcharlotte, you were told by 2 members here that it doesn't sound like ALS

You are going to go to a neurologist so it was suggested that you make sure you go to one who is an ALS specialist.

That's it. You are now sounding like people here have told you it's very likely and you are convincing yourself that your symptoms are typical.

We can't diagnose you, and your symptoms are vague and early stage of anything. But I will chime in as the third member to say your symptoms don't sound typical of ALS.

I'm so sorry you lost your mum to ALS. Has there been anyone else in your family? 1 family member does not make this genetic. If you mum is the only person then you have as much chance of ALS as I do.

Hopefully you can get an appointment soon, in the meantime try to enjoy your 8 yr old and keep on living as much life as you can.
 

jcharlotte

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Affected,

Thank you for taking the time to reply.

Your suggestions are well intentioned, on spot, and I will take them as best I can. Not enjoying life certainly doesn't make anything better, whether or not you have ALS or you don't.

I realize one family member does not make it genetic and I do not think that it is.

I have done the same research as others and saw that ALS was definitely one of the conditions which can introduce itself this way. After going through this with my mom I realize that the experience with her has caused me to panic a bit and could cause some of the other conditions. I will say though that that fingers getting stiff and slowing down and not working and having problems typing is scary to someone with knowledge of this disease. It is definitely a concern.

I will continue to help in the fight against this awful disease, regardless of what it is that I have.

I have already seemd to have made a connection with Max E, which is great.

Thank you again for the reply.
 
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