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kazzy

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Joined
Mar 22, 2006
Messages
29
Hi guys,

Still waiting on emg hoping to get in earlier as neuro report to gp was not good and breathing issues worse. I guess I failed the exam you might say! Did not pass with flying colours and after a lengthy report from neuro finishing line was "UNFORTUNATELY patients signs and symptoms are in my opinion as a result of motor neurone disease."

Personally I think I;m just going to wake up tomorrow and be ALL BETTER and realise it was just all in my head! After all it was all just hyperchondria and I had it so bad that I not only convinced myself there was something wrong but the medical professionals as well!

:cry: :cry: :cry:

Don't want to play this game anymore:( :( :( so might just go and cruise down De Nile (Denial):mrgreen:
 

BWk

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Joined
Jun 6, 2006
Messages
113
Reason
PALS
Country
grant
State
new mexico
City
silver city
HI Kazzy, WHat other symptoms do you have?Have you had much twitching I have much!DO you have cramping, I've had none.Only been on site couple weeks. Barry rotten stuff this illness!
 

kazzy

Member
Joined
Mar 22, 2006
Messages
29
Hi BWk

I have weakness, loss of co ordination and balance, fasics, cramps, etc.

What is really driving me crazy is the wait. I'm 2 or 3 weeks away from getting a better idea about what's going on but it's been a long time coming.

I think the people on this board must be amazing people to go through all this and still have a sense of humour and love and support for one another.

This is so hard not knowing, I have a husband and kids who rely on me and it's heartwrenching having this sort of testing! Just don't know how I would cope if the news isn't good I wouldn't be sad for me so much it would be for the ones I leave behind.

Certainly hope you get the all clear or maybe something less sinister and easily treated.

Cheers,

Kazzy
 

marlo

Active member
Joined
Feb 20, 2006
Messages
92
Hello Kazzy,

You said exactly how i feel too. It's not for me that this disease causes saddness,, but for those that i will leave behind. I just try to make the most of the time i have left. It is hard to do,, since 2 of my children don't live by me. But they call alot so thats as good as we can do for now.

Take care all ,, and best of luck to all you who are still waiting for a diagnosed.

Love and Prayers
Marlo
 

BWk

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Joined
Jun 6, 2006
Messages
113
Reason
PALS
Country
grant
State
new mexico
City
silver city
Kazzy,

For me I knew from the very first from doing much research in our library.Terror was with me for a couple months after that,but now it's backed off some.I don't know what to say to anyone on the fear factor is a tough one indeed!Live hour by hour is only way to handle it for me anyway.How old are you[sorry]I'm 57,58 July 1st,How long have you been having your symptoms?I had heart problems during having als symptoms back 1 1/2yrs ago[I did not know at the time it was MND]. Well,they fixed my heart and I guess saved me for this!It,s tough to wait though,try to distract youself. Barry of N.M.
 

Al

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Joined
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Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
I can relate Barry. I had a quad bypass in july 99 and was diagnosed in Oct 03. Knew in about April I had this fun thing even before the doc's. They didn't think it was possible. Surprise. Sh-t happens. We're all here now and hopefully having the time of our lives. Live for today.
 

kazzy

Member
Joined
Mar 22, 2006
Messages
29
Hey BWk

I'm a bit of a pup - only 41 years young! That's why it was thought more likely ms at first. It's all a bit of a shock but I just have to keep thinking positive and hoping the emg will prove the docs to be wrong!

Cheers,

Kazzy.
 

BWk

Distinguished member
Joined
Jun 6, 2006
Messages
113
Reason
PALS
Country
grant
State
new mexico
City
silver city
Kazzy

Early on my emg and nerve conduction test showed everything was normal which is common from what I have heard. So sometimes it takes awhile to get a definite diagnosed. Twiching seems to be one of the big factors in diagnosed of this illness.If it don't go away in time it's possible als unfortunately. I have never had one cramp, but maybe everyone is just different in there symptoms.Seems to be that way to me. Barry
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Got my DX last month

I've been having spasms and cramps in legs for over 15 months. Then they seemed to slowly go up my body over time until now I have them all over. What surprised me was the weakness in my legs like my muscles were not even there anymore. I think I've known what I had before the doctor even told me.

I have a great doctor who ran all the tests before she would give me the news. She did not want to upset me if it was anything else.

My lung capacity is down so now am using a Bi-Pap at night to help with the breathing. Motorized wheelchair has been ordered that tilts, thanks for the info on that here.

I am concerned about latter stages and personal hygiene, maybe someone can send me private message on what to expect and how to deal with it best. Not sure if that is the kind of subject for the main forum?

How do you deal with ALS? All I can say is I personally trust that God does not let anything happen without a reason. And since I'm still living, HE must not be thru with me yet. I'm 59 soon to be 60, I have 14 grandchildren, that alone is a full time ministry. I hope I can encourage others to seek peace with God and with the remainder of their lives.

Try to have a positive attitude, I know it's hard, but at least try, and let those you love know it now before it's too late. If you have a grudge in your heart against someone, now is a good time to work that out. You may not get a second chance.
Don't leave this life with any regreats. Many people don't get this time like we have right now.

I've missed so many opportunities to help others and now Physically I can't but maybe a word well spoken at the right moment might just be what they need to make it through the day.

God Bless You All and I hope you have the best day possible.
:smile:
 

kazzy

Member
Joined
Mar 22, 2006
Messages
29
Good Advice

MtPockets said:
I've been having spasms and cramps in legs for over 15 months. Then they seemed to slowly go up my body over time until now I have them all over. What surprised me was the weakness in my legs like my muscles were not even there anymore. I think I've known what I had before the doctor even told me.

I have a great doctor who ran all the tests before she would give me the news. She did not want to upset me if it was anything else.

My lung capacity is down so now am using a Bi-Pap at night to help with the breathing. Motorized wheelchair has been ordered that tilts, thanks for the info on that here.

I am concerned about latter stages and personal hygiene, maybe someone can send me private message on what to expect and how to deal with it best. Not sure if that is the kind of subject for the main forum?

How do you deal with ALS? All I can say is I personally trust that God does not let anything happen without a reason. And since I'm still living, HE must not be thru with me yet. I'm 59 soon to be 60, I have 14 grandchildren, that alone is a full time ministry. I hope I can encourage others to seek peace with God and with the remainder of their lives.

Try to have a positive attitude, I know it's hard, but at least try, and let those you love know it now before it's too late. If you have a grudge in your heart against someone, now is a good time to work that out. You may not get a second chance.
Don't leave this life with any regreats. Many people don't get this time like we have right now.

I've missed so many opportunities to help others and now Physically I can't but maybe a word well spoken at the right moment might just be what they need to make it through the day.

God Bless You All and I hope you have the best day possible.
:smile:
Thank you for the encouraging words and good advice. This is THE BEST ADVICE you could possibly give anyone.

I too am a Christian but I don't always act like one because I'm also human and I do have people I need to make peace with and that is a great idea whether we have 6 months or 60 years!

One thing this has taught me is that life is so precious and we need to treasure every moment using everything we have to bless others.

God bless everyone here and have a great day.
 

papaw50

Active member
Joined
Jun 19, 2006
Messages
38
Reason
PALS
Country
US
State
West Virginia
City
Ravenswood
touched by your message

good morning,
I was very touched and moved by your words. My husband (49 years old) was just given the diagnosed of ALS this past Monday, June 26th. A day we will always remember. The hardest part so far has been telling everyone we know. They look at us like he's already dead and gone, which bothers me terribly! He is ALIVE and is not going to give up without a fight! People have asked "is he able to continue to work?" I guess ignorance is to blame for their stupid questions.
Right now, I think my husband is in denial. He still thinks it might be related to an accident he had over three years ago - he fell from scaffolding and broke his right shoulder. He's had the muscle twitching for over 1 1/2 years, right/left hands and arms are weak, unable to button, tie his shoes, use screwdriver - the little motor skills involving his hands. He's unable to lift his right arm up above his head. He gets really tired lately - before, he was abundance of energy, always on the go. He coaches high school baseball and basketball. People are already asking if he's going to continue to coach - well, as long as I can wheel him to the gym/field, he will continue to coach. He is NOT giving up! His last EMG showed that even at rest, his muscles are active and irritated.
I'm just wondering - do a lot of you ALS patients...were you in denial at first? how long until you finally accepted the diagnosis? my husband wants to get a third opinion.


Again - your words were touching and helpful and inspiring.

May God richly bless your life! Hold on! God is in control.


Patty
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Patty. Most (all?) of us go through a period of denial. Some it lasts for a few weeks and some it lasts for a few months. I'm sure there are still people that have had it for years and are still in denial. Everyone has to deal with it in their own way. To some denial is a hope mechanism. They think that if they don't admit it it is a fighting thing. If he's still in serious denial in a few months I'd be talking to his doctor. Good luck.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hey MT. Go to the People with ALS Section and click on the topic Daily Living Manual. There is some stuff there about bathing and toilet issues. It should give you some ideas. AL.
 

kathmc

Active member
Joined
Jun 9, 2006
Messages
51
Reason
PALS
Diagnosis
02/2006
Country
US
State
ky
City
lexington
de nile passage

Sorry you are having to go through all this. Think it natural to look for better disease to have. I did. After I disagreed w/ #4 neurolog., saw 2 more. Guess in long run liked their answer even less, although at first was nice 5 year mystery solved.

A transition period may not be all bad. My subconscious works on stuff I forget/ put off. When it is through chewing on issue, generally there are clear points not there b4.

I still 1/2 believe 100's of falls overfilled head w/ fluid, but lack the fight to say to Dr. "Hey, at this point could a shunt make it any worse? Maybe both conditions are in play so there is possibility of some improvement". I even have a N.Y.Times article by woman who after fall, kept falling. after 9 years she is barely there( fog ) in a wheel chair. Her family keeps trying, finds a neuro. that puts shunt in even though mri doesn't indicate fluid on brain. POW...out of chair, can write for the times! Even as it progresses I wanta be in another club. Don't think it will happen.


best wishes to you,
kathy
 

dana

Distinguished member
Joined
Mar 17, 2005
Messages
216
Kathy,
You described a woman who was in a fog...my dad is becoming more and more in a fog. His confusion/fogginess is almost worse than the disease. It is hard to see such a bright person become like this. Not only is he losing his body, but now his mind is getting bad too. This has been going on for several months and continues to get worse. What is the shunt that you are talking about?
Dana
 
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