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JAKE

Distinguished member
Joined
Nov 27, 2007
Messages
110
Reason
PALS
Diagnosis
11/2005
Country
US
State
Louisiana
City
Winnsboro
Since I'm new to this forum, I would like to give my story up to now and hopefully it won't be too long. First of all I want to make it clear I'm not looking for sympathy and on the other hand, by no means do I mean to be bragging about anything that I say. To the best of my knowledge, it all started a little over 4 years ago with me. I noticed when I picked my bow up to pull it back and practice before the season that I had lost some strength in my arm. I down played it to me being in my 40's and not doing any hard manual labor and thought I needed to work out and exercise some. After a period of several months I noticed I did'nt have the grip or pinch I should have between my thumb and index finger. My hands got progressively worse with me first noticing a muscle loss on top of my hands between the thumb and index finger, more noticeable on the right hand. Eventually I developed a wrist drop on my right hand and about 2 yrs later before I had the wrist drop on my left hand. After dealing with the initial symptoms for about 2 yrs, in Sept. of 2005, I went to a general neurologist and had him check me out. He did blood work, MRI, EKG and EMG test. He decided to refer me to a nerve/muscle specialist in Houston, Tx. Went there in Nov. of 2005 and spent 2 days of testing, afterwards he said it appeared I had ALS, which he put "Probable" ALS in his report. I went on extended sick leave in Jan. 2006 due to legs weakening. A little over 4 yrs since experiencing initial symptoms, I can still walk, though not well, and not a long ways, can stand with no problem with my hand on something, just can't stand and balance myself. I have had no problem eating, no breathing problems or no problem talking, thanks be to the God of my salvation. I have muscle tone loss in my body, but at this time weakness in my legs are the biggest problem I have, which naturally the hands give me problems, but I'm still able to feed myself. I don't feel like I have completely lost use of any of my muscles. Maybe what I have said may help someone else or if anyone has any questions feel free to ask. Sorry about being long, I just felt like I needed to tell this. I want to say this in closing, I know that God has been with me through all this, he has gave me a peace of mind that surpasses all understanding. God is the reason why I'm still walking today, though not well, and to him I give all the praise and honor.
 

vmd

Senior member
Joined
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581
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Other
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US
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idaho
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N/A
Glad to hear you are doing well. Apparently, progression of your symptoms is very slow. Did the diagnosis of "probable" change in subsequent examinations? Take care and keep me in your prayers.
 

JAKE

Distinguished member
Joined
Nov 27, 2007
Messages
110
Reason
PALS
Diagnosis
11/2005
Country
US
State
Louisiana
City
Winnsboro
vmd, Thanks for your response. They gave me the opportunity when I went to Houston, to come back every 3 months and let them evaluate me. I chose not to do that, based on a 6 hr drive, plus the fact if they could have helped me, I felt they would have told me there. I have been seeing my local neurologist every 6 mths and he is amazed at how well I am doing, to the extent he basically doesn't think I have outright ALS. He made me an appointment with an older neurologist in Shreveport back in March. He examined me and looked me over for about an hour and told me I had the characteristics of ALS, but it wasn't typical of ALS. He is the one that told me that the Dr. in Houston had put probable ALS in his report. If anyone knows of a good clinic, I would take suggestions, because I have only had 1 specialist look at me.
 

TomR1972

Active member
Joined
Mar 25, 2007
Messages
55
Reason
PALS
Country
US
State
Ca
City
San Jose
hi jake

Jake,

thanks for telling us your story. I am about 9 months into my symptoms but have no diagnosis as of yet. I have pain and weakness between my thumb and index finger, did you experience that type of feeling? The skin on top of my hand between the thumb and index finger is also very wrinkly looking but I can't see any atrophy, but believe its happening. Shoulders seem smaller but bigger gut as I eat out of fright now.

Do you get twitching, when did it appear?

Thanks for your time Jake!
 

JAKE

Distinguished member
Joined
Nov 27, 2007
Messages
110
Reason
PALS
Diagnosis
11/2005
Country
US
State
Louisiana
City
Winnsboro
Tom, Thanks for your response to my thread. Actually I have never experienced any pain or weakness between my thumb and index finger. The only time I ever experience pain is when I stand for a long period of time, and its below my knees, in my legs. The first place I noticed atrophy was between my thumb and index finger and then I noticed it later in my whole hands, sometimes more noticeable than others. I actually started experiencing twitches at the onset of my symptons, over 4 yrs ago. My twitches come and go, in other words im not steady twitching in 1 spot all the time. Speaking of the stomach, 2 yrs ago before I quit working I had lost from 170 down to 160, this occured 2yrs after the initial symptons, I guess because of atrophy in my body. I have been on sick leave now for right at 2 yrs, and I now weigh 180 lbs, which means I have gained 20lbs sitting here at this pc, and its in my belly.:-D One more thing I want to add, during these past 4yrs, I have never felt weak at all, I actually feel as good as I ever have, which I'm thankful for. May God Bless you Tom.
 

TomR1972

Active member
Joined
Mar 25, 2007
Messages
55
Reason
PALS
Country
US
State
Ca
City
San Jose
Jake

I love your upbeat personality! I am truly frightend of this and your original post hit home. I had a neuro at stanford do a general in office exam, look over all of my prior tests and results and he seemed to be 99.9% positive its nothing like als. I even asked him about that and he said he sees most of the als patients in that area and I don't have anything similar. Which is funny because according to everyones symptoms on here and the rest of the web I fit in like a glove. I am not convinced and am getting tired searching for an answer. I am so glad to hear you are doing really well for the amount of time you have had this awful disease. Why after 4 years did you decide to get on here and let out your experiences? Just curious?

Thanks

Tom
 

JAKE

Distinguished member
Joined
Nov 27, 2007
Messages
110
Reason
PALS
Diagnosis
11/2005
Country
US
State
Louisiana
City
Winnsboro
Tom, I have never been sold on the fact that I have ALS, of course I'm not a Dr. so I can't say I don't. I have known of a few people around my area that has had ALS and I saw how fast they went down. Remember in my earlier post of what I said about the nerve/muscle specialist saying "probable" and then my local Dr. saying he didn't think I had outright ALS. For a long time I didn't want to read anything about ALS, then my curiosity got to me and I started dabbling with it, looking for info on the PC. Actually I accidently ran across this forum 2 days ago and realized it was people that were battling this awful disease, relating their problems to each other. So I thought I would join and maybe someone could be of help to me or maybe I could help someone else in some small way. So far I have really enjoyed it.
 

papaw50

Active member
Joined
Jun 19, 2006
Messages
38
Reason
PALS
Country
US
State
West Virginia
City
Ravenswood
treatment

Jake,
Are you taking any type of supplements? vitamins? herbs? etc.?
My husband was diagnosed in June, 2006 - weakness in hands & arms, constant twitching in arms, back, chest. He has been on a regiment of vitamins and herbs since that day and I am happy to say that his progression has been slow. He goes to Dr. Guttman in Morgantown, WV and they are amazed at how slow his progression is at this point. His stamina is not like it use to be - he definitely gets more tired easier. The only thing I have to help him with is buttons, cutting up steak, chicken etc. tying his shoes (sometimes), and pulling his shirts down.
He feels it is the vitamins and herbs he is taking that is slowing the progression. I think it's his attiude and how he says "I have als but als does not have me". He still lifts weights - not as heavy as before (I think he told me around 50 pounds)?
 

JAKE

Distinguished member
Joined
Nov 27, 2007
Messages
110
Reason
PALS
Diagnosis
11/2005
Country
US
State
Louisiana
City
Winnsboro
Papaw, Thanks for your inquiry. Yes I am taking vitamins, which I started right after my diagnosed in Nov. 2005. Vitamin C - 1,000 mg 2 times a day, Vitamin E - 1,000 mg 2 times a day, Beta Carotene - 25,000 IU 1 time a day, Melatonin - 3 mg 20 min. before bedtime, and Co-Enzyme Q-10-75 - 100 mg 2 times a day. My wife basically has to help me do the same things far as buttoning shirts, cutting meat, tucking shirt tail in, etc. This is all due to the muscle loss in my hands, although my hands or the rest of my body don't feel weak at all. Yes, I feel that my attitude towards this situation has been the key also and I honestly believe that God is going to heal my body, and I'm not going to let go of that. I know that without God I couldn't have the peace of mind that I have. My prayer is that God would richly bless you and your husband. PS - How is his walking?
 

esrich

Member
Joined
Aug 5, 2007
Messages
28
Reason
PALS
Diagnosis
11/2007
Country
US
State
OK
City
Ardmore
vmd, Thanks for your response. They gave me the opportunity when I went to Houston, to come back every 3 months and let them evaluate me. I chose not to do that, based on a 6 hr drive, plus the fact if they could have helped me, I felt they would have told me there. I have been seeing my local neurologist every 6 mths and he is amazed at how well I am doing, to the extent he basically doesn't think I have outright ALS. He made me an appointment with an older neurologist in Shreveport back in March. He examined me and looked me over for about an hour and told me I had the characteristics of ALS, but it wasn't typical of ALS. He is the one that told me that the Dr. in Houston had put probable ALS in his report. If anyone knows of a good clinic, I would take suggestions, because I have only had 1 specialist look at me.

Jake, there is a clinic in Little Rock that I think would be closer to you. I think it is a 3.5 or 4 hour drive from where you are. If you look on www.alscareproject.org there is a list of clinics in the U.S. Too bad you aren't closer to Oklahoma. The clinic in OKC is great. My husband's symptoms started pretty much the same way and the same time yours did and he only got a firm diagnosis in November. No breathing or bulbar symptoms. You weren't ever in the military were you?
 

papaw50

Active member
Joined
Jun 19, 2006
Messages
38
Reason
PALS
Country
US
State
West Virginia
City
Ravenswood
attitude

We believe in the power of prayer! God hasn't healed my husband but He has given him a peace to accept the diagnosed. He has als but als does not have him. We take one day at a time.
He takes the following: Vit C, Vit E, Beta Carotene, B 12, GNC Men's Mega 50 Plus vitamins, SeaVegg, Aquazon, Creatine, Selinium, Flax seed, Fish oil. I think there might be more but off the top of my head, I can't think of all of them. ha!
I also fix him a protein shake that he drinks daily (soy milk, creatine, whey protein, bananas, strawberries).
He has an appt on December 20th - anxious to see how his breathing test turns out.
His legs are strong right now. Lately, he has fallen down a few times but he's always had an explanation or reason for falling.
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Jake, great post! Love your attitude! Keep your faith in God, and it will take you a loooong way. May God bless you!

Irma
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
pawpaw, your husband is in my prayers. This is such a devastating disease. Prayers are so amazing, don't you think? God bless!

Irma
 

JAKE

Distinguished member
Joined
Nov 27, 2007
Messages
110
Reason
PALS
Diagnosis
11/2005
Country
US
State
Louisiana
City
Winnsboro
Esrich, Thanks for your inquiry and the info, but no I have never been in the military. May God bless you and your husband greatly.
 

JAKE

Distinguished member
Joined
Nov 27, 2007
Messages
110
Reason
PALS
Diagnosis
11/2005
Country
US
State
Louisiana
City
Winnsboro
Papaw, I failed to tell you that I also take the Creatine powder, 1 tsp in a cup of water 2 times a day. I have been taking that since March of this year. I hope everything goes well with the visit. I always tell people that if my legs were stronger I would be 90% better, thats the biggest problem I have right now, other than my hands.
 
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