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Cornelia

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Hi I am new to this forum. It seems like there are a lot of caring and kind people here.
I was wondering if you could provide some feedback to my story

I am 49 years old. Back in April of 07 I cought a bad cold, the sore throat never went
away, and then turned into a feeling of a lump in my throat. I then also developed a
burning sensation along the right side of my tongue and it has been hurting since then.
About 5 weeks ago I noticed that my hands had a tremor in them, some days it seems
a little better, but then not. I have fasticulations in all my muscles. My upper arm muscles burn sometimes, like I did some serious weight lifting. I am having more trouble sleeping than I usually do. I have a good NP and she is sending me around for
alot of tests. At one point when I put her on the spot, I asked her do I have MS, and she said no she did not think so but I might have some sort of muscular dystrophy, but
she was not going to give me a diagnosis of ALS.......sooo now that I was really scared
She wrote me a perscription for zanax and an MRI. I went to see 2 Neuro's. The first one basically discounted any ALS and said it was anxiety (which made my husband very happy). The second one gave me a better exam and I am going to have an EMG done on Sept 27. She also stated ALS would be unlikely, but as I am having more and more
testing done and they are coming back normal. I am becoming very scared that ALS
is going to be the only thing left on the table.

Thank you for letting me tell my story
 

guwainengle

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Cornelia-

You are at the right place for support-I hope all goes well. Remember to start documenting allthe progression of your symptoms. Sometimes anxiety can cause these symptoms. ALS is a diagnosis by exclusion and can take quite a while as many on this site will explain. Keep the faith and remain as positive as you can. You suggesting ALS and a Neuro suspecting a MND are 2 seperate things. If you remain questionable-- go to a MDA/ALS spicialist or certified center. This is your best place for thorough expert testing. Thses doctors specialize in that field and are very familier with other types of neurological issues.

G
 

Cornelia

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Thank you G
I am trying to be hopefull. I scared myself half to death with a couple of websites,
but then thankfully I came accross this one.

thank you for your reply and kindness it means alot......Cornelia
 

brooksea

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Cornelia,

I very much hope you do not have ALS!

But, we are here for each other and hope we can help along the way to diagnosed.

Please let us know how your testing goes...
 

Jamiet

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Ok,

I'm gonna tell you one thing you need to look into is lyme. I wouldn't be selling this, but, i've specifically talked to one person, who had the same thing....a flu like cold and sore throat for 6 months, then all kinda other crazy crap started happening, end of the day, he had lyme. Not saying that's what you got, just don't overlook it, esp. based upon if you live in high risk zone.

it sounds to me as if this is some type if viral or bacteria. So, check for lyme, also other infectious diseases need to be looked into.

You don't sound like the typical ALS here, but there are exceptions to all rules.

Where are you from?

i think your EMG will be normal. you need to into other things besides ALS, something is going on, just what is the question.

thx,

Jamie
 

Cornelia

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thank you for your replies

My PA had a lyme test done but it all came back negative as did all of the ana's and
epstein barr, and a whole bunch of other stuff. the Dr's were really focusing on HIV
that came back negative, and then they did a viral load to confirm it. They tested
the thyroid, but that was a general test and I am now awaiting the results of specific
thyroid tests. Anyway it is scarry as it seems there seem to be less and less options
that have dire outcomes.

My husband and I adopted a little boy six years ago, he was four at the time.
He has some developmental issues, and the idea that I might not be around for him just
scares me. As a matter of fact I am just soooo scared all the time, I know I am being
like a big baby, but it seems I cant concentrate on anything else or think about anything
else. I have always been very physically fit and active, but in the last 2 months or so
my life has shrunk. I am tired alot, and get fatigued easily, this is so unlike ME.

My Husband likes to think it is all stress.......we just moved from NY to Fl
I know I am somewhat of an A type personality but I dont think it is all stress
There are indicators that fit so well with ALS. I know....I know one shouldnt self
diagnose but it is really hard not to. Thank you for your kind replies, I send you all
well wishes....Cornelia
 

brooksea

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Cornelia,

You're no baby! this is very stressful! And I know it makes you wonder why about a lot of things, like why did it happen that we ended up adopting this child.

We adopted our son and now I ask the same question. But I just know that he is better off now than he would have been. And you have to believe that your influence on your child will make a difference! It doesn't matter what condition you are in, you will still make a difference!

Where are you in FL? My SIL lives in Orlando area.

Please let us know how you are doing and we want to know the result of your test on the 27th.
 

Cornelia

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Hi Jimercat, thank you for your words of encouragement. I will let you know how I did on
the EMG. Best wishes to you cornelia
 
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