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stevef

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First I want to say hello to all of you who are suffering with als or those like myself who are not sure if they have it but believe they do. I want to say I pray for all of us that a cure will be found or at least something that will prolong life longer then anything avaiable now. I do not know how some of you stay so positive in a situation like this. I have had syptoms since around 2002 and maybe before that but they have seem to have come and gone. However they are back again and worse then before. It is sad to think I am praying this is MS which I have read can come and go unlike ALS. The thing that scares me the most is it is effecting me in the swallowing area this time and much more week then before. Before I only had twithing and minor things like that but this time it is different and worse. So weak and tired all the time. Not muscle weakness i do not think just weak energy wise. I have some blurry vision which i know is not a sign of als but it might just be something else. I have a nuro appointment with the mass general hospital mda/als clinic next week so please pray that it is not als and something else. I will always no matter what happened pray for all of you who suffer from this terriable disease and pray for a cure. Until now i really have been a idependent when it comes to politics but with the Dems so much more in favor of stem cell research i know where my votes will be going. I will nto rambel on with so many question i have right now i will do that in post to come. God Bless Everyone
 

Adele

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Welcome Stevef...I'm new here too & this site brings me a lot of comfort. I'm so sorry to hear about your symptoms & you will be in my prayers that it's not ALS...no one should suffer that way. I truly believe in the power of prayer & I hope that you do too. God Bless you & keep you safe, Adele
 

Jamiet

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Steve,

Sorry about not replying, i was one of the 16 views.

I've read your symptoms, and you have a long history of this, and it does not sound like ALS. It is usually not that slow and alot of the symptoms you speak of sound like MS. Hopefully it's MS right...some kinda wish.....i'm there too. I will say, anything is possible...most in here have seen it all..

I think the main reason you didn't receive many replies, is that most people, including myself, think you will be OK, based upon your symptoms and it will be confirmed by the doctors...lets hope....so look at it as a positive.

I've been fighting whatever i have since Sept. 06 and it's been a nightmare, but, you will move into a different phase, more calm and learn to live for today.

Please keep us filled in as to your appointments, don't think you are going unnoticed.

Good luck and take care..

Rgds,

Jamie
 

Jamiet

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Steve,

One other question...have you had an MRI, spinal MRI and all the other MS workups yet?

Again, what you have does not sound like ALS!

rgds,

Jamie
 

stevef

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thank you all and sorry

thank all of you who have responded and sorry i was so impatiant. i had an MRI a few years ago of the brain not the spine and it showed a small cyst or something like that. Docor at the va said i might be ms but would have to keep an eye on it. I am going for a second opion outside of the VA take to long to see someone there and mass general is one of the best in the country. sad to think i would excpet a diagnose of ms but i would feel better i guess knowing an answer other then als
 

ltr

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Hi steve,

Usually, on this site, weekends aren't as active. So, soon enough you will get better advise from more experienced PALS.

My symptoms also come and go which makes me suspicious of MS. Blurry vision is also a strong symptom. Hopefully when you go to your clinic appt. they will cover all the bases for you to get a diagnosis. Sounds like you are taking all the steps you need to get started. Good luck. Leslie
 

JenniLee

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Thinking of You!

Hey Steve!

I know it's hard not to worry, and you'll probably do it anyway. But, from now until you go to the specialist, try do some relaxation, deep breathing, picturing your body healing. No matter what, we'll be here waiting, hoping and wishing you all the best. And, not matter what, we'll deal with it together....it's a team effort.

I almost went to Mass General, but opted for Columbia and maybe John Hopkins instead. I understaand Mass General has some great researchers and the Neuro Director is excellent.

To bad you couldn't stop in CT on your way to MA....we could laugh & dance; even if it were totally uncoordinated ( my coordination is not so great, but I'm working on it).

So, my friend, take a DEEP BREATH! And remember to let us know how you're doing.

Think good thoughts....ALWAYS!
Jen
 

stevef

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jen

thankfully i live in massachusetts and it has some of the best doctors in the world. I do not think my wife would like me stopping by and dancing with you :) since i do not dance with her much. however that is all going to change. i have made a promise to myself, no mateer what is wrong with me no matter what will happen i am going to make an effort to ler everyone know how much they mean to me from now on. Al I love you message about live today like there is no tomorrow
 

JenniLee

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stevef said:
jen

thankfully i live in massachusetts and it has some of the best doctors in the world. I do not think my wife would like me stopping by and dancing with you :) since i do not dance with her much. however that is all going to change. i have made a promise to myself, no mateer what is wrong with me no matter what will happen i am going to make an effort to ler everyone know how much they mean to me from now on. Al I love you message about live today like there is no tomorrow

Steve....

That's okay, my husband doesn't dance either...when he does, it's just too scary! :)
I'm glad you're going to dance with her! It doesn't something to one's spirits. I danced with my 2 girls last weekend (5 & 6) in our rec room to raggae/beachy music, and i"ll tell you, I felt so much better....happy even. I don't think I'd do it in public considering I was tripping and stiff at times, but what the heck!

Jen
 

liz

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My kids and I have always enjoyed dancing together - I mean wild rock 'n roll dancing. A while back I had to start doing keeping my feet planted on the floor in order to not lose my balance and fall. It looks ridiculous and at first they made fun of me but now we all do it that way and it's loads of fun. We look like a bunch of idiots but were having a good time.:-D

Liz
 

stevef

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quick question

i know there are so many scams out there what is everyones opion on trying glyconutrient to help the body even if this is not als or is that just a scam. Man this thing is driving me crazy. i am not afraid of dying well maybe i am however i am more concerned for my littlr girl she is 7 yrs old and I mean so much to her not sure how she could deal with me being real sick and not being their for her. I pray for all of you have kids and grandkid that are so swaet and do not understand our fight
 

Al

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Steve. Save the money you might spend on glyconutrients and take your wife and daughter to Disney. You'll all feel better and those scamming buggers won't get rich off you.
AL.
 

stevef

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i figured that would be the answer i would get :-D
 

Jamiet

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I would be jumping for joy about now Steve.....

An MRI a few years ago is too far away and it's possibly this cyst..more than likely...and operable..

Man, your about 99.9% no ALS......

Good Luck...and how about the reponses now..lol

I've been thru what you are now going thru and completely understand.

If anything, this is a definitely a wake up call.....Don't panic now, spend every day, like its' your last....don't let your little girl see you panic....i've got two kids, one 9 months (little girl) and boy 6 yrs....so i know the ropes
 

ltr

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Liz,

That's a memory your kids will hold onto forever! I envisioned the bunch of you dancing from your description and I am sure when they are older they will giggle every time they think about it! Leslie
 
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