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jennibf

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It's been a while since I've posted on here and I had my visit with the neuromuscular specialist last week. We are 90 + % certain I do NOT have ALS or SMA or even PLS!

Things seem to be pointing directly at Multiple Sclerosis and yet they aren't quite ready to give me an official diagnosis yet. I have an appointment with my regular neuro on Jan. 11th and we'll go from there.

What I really want to say by posting here is that I am humbled. Before all of this began with my body I had no idea that there was such a disease as this. I cannot even begin to fathom what those of you who have ALS go through. I only have a small inkling and it was just...well..there are no words really...nothing adequate to describe just the fear of having ALS. Having gone through SMA with my nephew I had a little glimpse but ....well, words are just insufficient.

I cannot leave this board completely. I have to know how each of you are doing now. I will be back again and again and will pray and think of you often. I hope you do not mind. I consider you my heroes and yet I know you do not want this title but YOU are the ones who have made the colors in my life so much sharper, who have made me kiss and hug my children even more and appreciate every second of every day and you have helped me handle the pain and the symptoms. This experience has also taught me so much about the power of positive mindset and living in the present...and never losing hope....

Humbly your friend and prayer warrior,

jennifer
 

Zaphoon

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Very nice post, Jennifer! Keep us updated on any ultimate diagnosed.

Zaphoon
 

crystalkk

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Jennifer,

Please keep us updated, happy to here that they are pointing away from the other things.
Like Zaphoon said that was a very nice post.
 

olly

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hi jennifer

what is pointing towards ms? how were your mri,s?
even though they now say you dont have mnd,ms is no picnic.
one of my aunts had ms,also two friends,even i was considered of having possible ms when i first got ill.
i hope they give you a definate diagnosed soon so you can start betainterferon(dont know how to spell it)asap.
please keep us up to date on your progress.
by the way,wonderfull post:D
 

Al

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Well Jennifer I don't know quite what to say. Like the doc says, do you want the good news first or the bad news. Which is better or worse? Depending on your spirit, you have good news. My wife's niece has had MS for 12-15 years now and has had about 4 episodes where she couldn't work for a few months. So it's not all bad if they are leaning towards that. You've been around a while and made some friends here. You're always welcome.

AL.
 

hopingforcure

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Jenn,
I am like Al said happy for you. I guess sometime's the bad news, that you thought can be the good news. I would hope you will visit often, you still have so much in common with all of us. I always feel like once someone is here, we have another voice for ALS. I have 0 doubt that you will forever be a voice and supporter. I am happy for you, and hope to hear from you often...
 

brendapals

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Jennifer,
Yes, it's hard to know what to say, except 1) I'm tickled for you that it's NOT ALS, and 2) I'm humbled that you will keep fighting for those of us PALS.
My mother had MS for 26 yrs, and did really well with it, she was 52 when she was diagnosed. I was 47 when I was diagnosed with ALS, and have to say, I'm doing pretty well too-not much change in the last 7 months-except I kiss my kids more, laugh more, see vivid colors more, you know the pattern...
Never give up,
Never let up,
Never lose faith,
keep in touch,
brenda
 

planningguy

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Jennifer,

I'm glad you're on the cusp of getting the final answer. I think we all know people who have wrestled with MS, and although its no picnic, you seem like the type who will take it in stride.

Happy holidays,

Robert
 

laurel

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Hi Jennifer,
I have had relapsing remitting MS for over 20 years (my hubby has CIDP). It is pretty treatable these days as long as you don't have chronic progressive. I started out on drug trials of Rebif for 5 years, and then switched over to Betaseron for about 5 years. I developed neurtralizing antibodies and it ceased to work. Have been on Copaxone for 4 years, but will be going off this year as I got down graded to Secondary Progressive--which is just basically a slow decline and the Copaxone isn't going to do much so it is big bucks for little effect. I have had a pretty easy time of it with my MS as many people do. Some visual loss and minor mobility issues i.e. walking with a limp and fatigue. I wish you the best and hope that if you have MS you have a similar course as mine. The key is to get on some treatment ASAP if diagnosed. My neighbor has MS and he refused any treatment. He rapidly went downhill needlessly. So insist on treatment right away if you get the diagnosis.
Laurel
 

rose

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Jennifer, I don't have much to add to what the others have already said. I've not known anyone well that has had MS. What I do know is that your wonderful attitude will get you far with whatever it is you face and are ultimately diagnosed with. Please do keep coming back to the forum and let us know how you are! ((hugs)):)
 

lydia

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Jennifer,

I am glad (?) you are so close to answers and if that is what it turns out to be, I know we all hope you have a tolerable go at it. Seems like I hear every few months or so of another friend of a friend being diagnosed with MS. Please keep us posted!

Take care,

Lydia
 

awieleba

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Good luck with this! I am glad that things are moving toward a diagnosed and you can start some meds to help you get on with your life! keep us posted!

blessings!

april
 
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