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sharonca

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Hi- this is my first post. I was diagnosed yesterday at UCLA by Dr. Michael Graves. I was hoping for something short of "ALS". I was hoping that he would say "watch and wait". He said ALS. I first starting losing my balance and occasionally falling around May 2006. I fell and broke my ankle big time in July 2006. In July 2007 when I still just didn't feel right and was still losing my balance I went to my family physician. He said I was fine - couldn't tell that I was walking "funny". In August he sent me to a neurologist who did the usual MRIs, brain scan, pelvic scan and multiple blood tests. When he couldn't figure it out he sent me to UCLA for a muscle biopsy and EMG. They only did the EMG and more blood work to rule out auto immune issues. It is mostly in my ankles and legs. Although I have the muscle twitching all over. I get fitted for AFO's on Monday and got my Rx for rilutek (sp). I'm certain it has not even begun to sink in. Thanks for being there. I'm sure that I'll rely on these forums heavily. I have poured over them for the last month hoping that I really didn't need to do more than read.
 

CindyM

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Hello Sharon- I am so sorry about your DX. I am at a loss for words, as usual for me when a member announces a DX. This disease stinks, and I am sorry it has hit you now, too. regards, Cindy
 
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AngelManFL

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Hi Sharon, I'm very sorry to hear about your diagnosis - you will find many answers to many questions here, this forum is my second home and I hope and pray for you and your family that you will find comfort in knowing you won't have to face this alone. There are many experienced and knowledgable people here whom will be able to help you in anyway that you need whether it is answers to questions or just listening and able to give some comfort when needed.

May God bless you and your family - He is always by your side...
 

Icanmanz

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Hi sharon. Sorry to hear about your diagnosed. May God help you through this journey. Will be praying for you. God bless!

Irma
 

cherie

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Dec 26, 2007
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Reality sets in when?

Hi Sharon sorry to hear about diagnosed I cant imagine hearing that for myself..My spouse and I were told dec 19th of this year about his ILLNESS after months of testing for other illnesses such as tumors,and strokes and myastena(sp) its just been a long haul,My spouse is 40 yrs he is an artist and he hasnt accepted this very much at all he is in denial like I have never seen before:confused: I guess its something he isnt ready to hear I mean who is really..His family came here asking questions and he told them he wasnt sick! He said he hoped it was a virus and he would get better..I explained to them and him what the Dr has been telling us all along,My spouse keeps talking about our future plan in which I dont see happening becuase he wont be able to work with his arms at some point..It is so sad for me to watch him change on a daily basis,his walking is slower and slower and his voice is changing..I am at a loss here of what to do..I only want to do whats best for him,and see him through this the best I can,right now I am working on putting together a support team for myself and him when he is ready to..I told him that I come onto this site on a daily basis I think it is helping him to hear about other stories I have read about on here...
 

Al

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Country
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On
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Hi Cherie. There is an ALS Chapter in Victoria. The contact person there is John Braun. He is a great guy and I am sure he could give you good sound advice. I met him here in Toronto a few years ago at a symposium and was impresssed with what a genuine nice guy he is. You can get his number at www.als.ca and then look under contact us and BC. I hope this helps.
AL.
 

Icanmanz

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Cherie, hi! Just read your post, and I am truly sorry for you and your husband. May God help your husband accept this terrible illness. Right now he is in both denial and shock, bless his heart. I know the feeling of helplessness, knowing that there is nothing we can do. May God bless you folks. It just hasn't sunk in yet. Take care of yourself, and your husband as well, dear!

Irma
 

Vicki S

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Joined
Jan 2, 2008
Messages
32
Reason
PALS
Diagnosis
09/2007
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Alabama
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Daphne
I was Diagnosed Sept 11,07

Hi, I started falling around Mardi Gras 07. It seems like I spent a lot of time on the floor.


My family doctor sent me to a rhuemtologist who was a pill pusher. The prednisone ran my blood sugar to the 300's but it did get rid of the pain I have in my calfs when I wake up in the morning. He sent me to a neurologist. He did the emg and Mris on my neck and back. Then he sent to a specialist in Birmingham and he did another emg and said it was ALS. By the time I went to Birmingham I was in a wheel chair because my husband was afraid I was going to break a bone. The ALS is in my toes and ankles. I now have braces on both legs and I walk with a walker. I don't any balance. I don't fall forward it's always backwards. I'm afraid I'll have to go back to the wheelchair because I've fallen at least 8 times with the walker. I really have a hard head. I fell from standing position backwards on a concrete parking lot. People inside heard me hit. I went to the emergency room and had cat scan. No blood vessels were broken, no pooling blood and no fractures. All I had was a bruise on the back of my head. I'm on relatek and my symptions haven't progressed. I'm 61 and a Decorative Artist. I can still paint and read. I have friends that take me out to lunch and the movies. I'm also still invited to the Mardi Gras balls.

Vicki S
 

keith

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Mar 23, 2007
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Pennsylvania
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West Alexander
falls

I too tend to fall backwards now more than forward. One of my greatest concerns is falling in a parking lot and not being able to get up. A while back as I was trying to get into Wal-mart from the parking lot, and having a rather tough go at it, the greeter must of noticed me struggling and met me in the lot with a scooter, I could of kissed him ,though that might have drew some attention!
 

cherie

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Messages
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Country
CA
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British Columbia
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Victoria
thank you

Thank you all for the information it is very useful to us right now,my spouse is slowly realizing whats happen to him,we looked at his legs this morning and the right side is shrinking really fast,I didnt measure them yet to see the difference but you can see it..We have an appointment tommorw they want to do somekinda test on his throat,and and then we have an eeg set up for the 28th of jan..I know this is too early to be tired but I feel tired already...
 

Lorie

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May 17, 2007
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Loved one DX
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Alabama
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Mobile
Vicki

Vicki, I can't PM you. So here goes. I have been through the Neuros and Specialist like Tim, my brother has done. He had symptoms for 7 years before diagnosed. ALS.

You said you have pain in your calves? Like Spasams? I have the same. I have constant twitching in my ankles and dents below where they started in March 06. I have Muscle Twitching and Cramps all over. Where ever they want to be. But there consistent around my ankles. My feet have gave away a few times in the last months. The last time, I fractured the tiny bones in my right foot because my body weight all went in to my foot when my ankle went out suddenly.

They tell me no ALS. My concern is that I have had the same as Tim did for 7 years. Before DX. I don't concentrate on it. I just keep my Doc. updated.

I am curious!

Lorie
 

sharonca

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Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
Hi All.. I too fall alot but mostly forward. I can't seem to get up the slightest stair. Do alot of walking around! I was given an Rx for Ruletek(sp) before Christmas but didn't start taking it due to holidays and traveling. I was afraid I would get some of the side affects. Has anyone has problems taking it? I will be home in a few days and will begin then. I notice Vicki S said that her symptoms have not progressed. Mine have progressed just in the last three weeks. Scary. I have beent told to type less and not to exercise. Since I am so new to this I just don't know what to do. Quit working - for my husband's office, file for SSDI, what to do even though everyone says nothing makes it better. At least I'm sleeping these days since the Dx. Nothing to wonder about there. Thanks for all the input.

Sharonca
 

liz

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Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
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NY
City
Albany
And I fall sideways (to the right) because my progression is lopsided. Once I'm down, I can't get up without assistance. Made a big scene in KMart the other day - finally got picked up by a gigantic teenage boy who happened by. He was great - just scooped me up, set me on my feet, and went on his merry way.
 

CindyM

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:-D Some people will do anything to get swept up by a young man! :-D
 

sharonca

Distinguished member
Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
Rulitek side effects

I'm only on the first week taking the Rilutek and I'm having (last night and all day today) weird muscle pains. All night had trouble sleeping with the pains in my "back side" and legs and then today adding my left arm. Does anyone else have this? I tend to have the rarer side effects on any drug I take. I really want to be able to take this. I appreciate any response.

SharonCA
 
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