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nikim1806

Member
Joined
Sep 19, 2010
Messages
10
Reason
PALS
Diagnosis
12/2010
Country
US
State
pa
City
State College
"While it's not 100% it is highly suspicious of ALS" so he has put me on Rilutek and said we should wait 3 months and see how it progresses.

Do I wait? get a second opinion? is this similar to how others were diagnosed? Do I wait to tell my family?

It started 9 months ago in my left hand,, at first it was just a bit of clumsy typing.

Within 4 months I couldn't use my left hand to "shift" at all and my speed on that hand is dramaticly slower, holding things is harder, i have to focus and push really hard to get myself to point with that hand and when i clap it feels more like my right arm is beating up my left than a clap.

In July I could still do a kartwheel but I tried one saturday and my arm buckled.

What do people think I should do or is waiting 3 months how this thing goes?
 
Hi,

presumably, you have had many tests to rule out other conditions?

And an EMG? Have you been diagnosed by an ALS specialist? It is always a good idea to get a second opinion, especially with conditions like ALS, where diagnosis is clinical (there is no one single test that determines the diagnosis).

I have heard of other people being offered Rilutek before being given second opinion.

All the best, Dani
 
Thanks Dani,
Yes I've had the MRI's the EMG (3 times because they had to sedate me to get the needles near me) and a pile of blood work. The Doc I've been seeing is an ALS specialist (which is one of my concerns,, does a zebra hunter see zebras when really it's horses?)
 
Thanks Dani,
does a zebra hunter see zebras when really it's horses?)

Good analogy . Either way, more opinions are in order. You're only a couple hours drive from Pittsburgh and UPMC. (go Steelers 8)! ) and that would be a very good place to consider.

I am sorry for the news you were given. Either way, correct or incorrect diagnosed, you will learn how to cope. Your world is not over, just changed.

As for your family, that's a subjective decision. My own experience was that we talked about the possibility for a few months, and there was no one big moment of revelation. Perhaps, this is a tact you could take. Ease into it saying "suspected" and let everyone find their way of dealing. You can't choose how that will go. Some loved ones want to learn everything there is to know about MND. Others react by virtually ignoring the subject. And then, others are only too happy to keep suggesting alternative medicine ideas that will "cure" us. Its just how it is.

Good luck to you, please feel welcome here.
 
Obviously having an ALS suspect it is ALS and put you on Rilutek is a difficult and stressful situation. There is never anything wrong with getting a 2nd opinion. As my Neuro told me "never let a Dr tell you that you have a incurable disease without getting a 2nd opinion." Your Dr may even have someone that they can reccommend or as Rose said you are not far from Pittsburgh.

What has your Dr advised you about your EMG results? I suspect that there may have been abnormalaties in your EMG but not enough to clinically diagnose you with ALS. So your Dr wants to wait 3 months and see if their is progression. Did your Dr mention repeating the EMG in 3 months?

I will hope and pray for you that you have something other then ALS. That being said just remember their is life after diagnosis. As Rose said your life will change but you have a lot of life left to live and experience. It is important to remember that.

As far as your family I too would suggest that perhaps you share with them what they suspect and this way they will have time to wrap their minds around your situation regardless of what the final diagnosis is. Definitely expect your family to come up with all types of alternative diagnosis based on what they have "heard or read". As I said my prayers are with you!
 
Oh gosh i hope i don't have to repeat the EMG, he didn't say I did (it was very traumatic and they ended up having to knock me out for it).

He said it was a motor neuron disease but because of a pinched nerve in my elbow he would have to wait to see how it progressed to give an affermative diagnosis.

So far this morning I've sent in my script for the meds and have scheduled an appointment at the Danville ALS clinic for october 28th, one with my local neurologist (I am going to make him sit with me and explain every detail of what is going on and I don't care if he has to hand over all his afternoon appointments to his partner) and am trying to locate local groups (should I need one). Is Pitt better than Danville? or is Pitt just what people out of the state know about?

It really really calmed though to hear you both say that while it will be a change there is a lot of life left. Thank you

I am surprised though that my doc didn't say "and find some physical therapy"
 
and oh yes HELL YEA GO STEELERS! :)
 
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