For Shatzie

[mamaoftwo]

I just read your post. I am so sorry the neuro thinks it is ALS. My heart goes out to you.

[Shatzie]

Thank you. I don't know just what to think right now. I still feel a little shaky. Although I knew ALS was a possibility, it was still surreal to hear him say that's what he thinks it is.

[mamaoftwo]

I know. I havent gone back yet for my next appointment and I often wonder how I will feel (would feel) if I hear a definite diagnosis. You are not much older than me. My youngest is 3!
This is so hard. We all go through life thinking that these things happen to "other people" and then lo and behold, the heavens open one day and crap on your head from a great height.
It is truly surreal to have a life, a future and a relatively carefree existence to suddenly - this!
In my as yet undiagnosed state, I try to draw strength from all the amazing people on here who go on with their lives despite ALS. I don't believe there is a better support network than this one.
Did the neuro offer any possible alternatives or is he pretty sure?

[Shatzie]

This site is definitely the best thing I have found for info and support.

The only thing he offered as a possibility was ALS. He said he has seen several patients like me who don't fit the criteria at first, but then a few months later were diagnosed. He teaches neurology at OSU Medical School and many doctors in the area refer to him.

[mamaoftwo]

I guess that means your EMG wasnt conclusive. I think (and Jamie is our expert on this) that you have to have 3 limbs plus paraspinals to "qualify" as it were. Or maybe it is 2 limbs.
Or maybe you only have lower motor not upper and lower motor. If its only lower motor, you may still have PMA which I think is a slightly better prognosis than ALS. (I'm guessing because I recall you said you had weakness, fasics but I dont recall you mentioning spasticity, clonus etc).
Either way, there are a ton of people on here who will be with you ever step of the way.

[Tall John]

I wake up every day believing that it can't be true. Do the things you like to do and love your kids.

I have two girls (4 an eight)

[lovelily]

So sorry things seem to be going in this direction. Your mind must be spinning right now with questions.

When I had my EMG the doctor was quite talkative through the whole procedure and I knew immediately when he found problems, like positive sharp waves, fibrillations and denervation.

I didn't know what a fibrillation was until he told me. I hope your doctor was as communicative as mine.

Good luck with your next appointment.

[CindyM]

Oh Shatzie! I hope they find something other than ALS! I hardly know what else to say. Hugs, Cindy

[mamaoftwo]

Lovelily - I thought your diagnosis was poly, like Leslie's. Is that not correct? I had no idea that you can have +ve shp waves and fibs with that.

[lovelily]

Hello mama,

I had 2 muscle biopsies and one EMG. First biopsy showed myopathic changes. Second biopsy showed a whole paragraph of abnormal findings....but the bottom line said chronic and partial denervation.

Then I went to New York City to see a specialist and had an EMG on the opposite side of my body and the one leg showed the findings that I typed.

I had a disc herniation so he said probably "radiculopathy" but come back if symptoms don't improve.

The abnormal findings were in my thigh muscles which could correlate with what he says, but I have no root impingement. The other problem is that I have muscle weakness in both legs and atrophy of both calves and at my wrists.

All of this running around took a while and by the time I was done I just wanted to be back with my local doctors.

My neuro does not agree with what was said. He didn't believe that atrophy would happen were it did from a disc herniation.

That is were it stands.

[lovelily]

mama,

I replied. Hopefully it will be posted soon.

[nikk]

my sister has poly and aps just like lovelily. it is very close to als and the docs say it is inconclusive of rather it can turn to als. i have watched her quality of live change dramatically as she declines just like a person with als.

[lovelily]

Mama,

I don't know if the moderators lost my post. I do have APS, but not poly. I am guessing you mean "polymyosytis"?

I've had 2 biopsies. Abnormal. One myopathic the other denervation. One abnormal Leg EMG.

[Al]

Sorry guys. I was out till late last night and didn't get back on to look at things.
AL.

[Shatzie]

I had a wonderful experience yesterday. After school my principal and twelve other teachers met in my room to lay hands on me and pray. I sent out an email Monday afternoon to several friends asking for their prayers and I have received dozens of emails from people that got the message forwarded "through the grapevine". One friend I haven't seen in over 20 years.

Thanks for your concern. I am in the best place I have ever been physically, spiritually, emotionally, so if there was ever a time that I can face this, it is now.

[mammaberger]

Shatzie, it sounds like you are in a great mind set. Lovelily it seems as if als is not the only devastating neurological disease. From what I understand most neurological diseases are not that treatable, they are going to take there course over time despite treatment als,poly,aps,ms etc. I think we have to remember als is not the only terminal devastating neurological illness.

[vmd]

Shatzie:

I am curious. You state that you have some slurring issues. Considering you are a teacher, how has this affected your teaching? I ask because I lecture to my classes and I am concerned about a decrement in my ability to teach, given some of my speech problems.

[Shatzie]

At this time the amount of speech difficulty is mild, but now nearly everyone I talk to can tell there is something wrong. The first time I went to my neuro in November, he said he couldn't tell there was a slur, but a month later he could. On a good day I sound like I have a lisp. On a bad day I sound like I have had a few drinks or a strong pain pill. Sometimes when I am teaching, I go to say a word and all that comes out is "blaah". I teach second graders and told them and their parents early in the school year that I am having speech problems and I am seeking medical help for it. Whatever the official diagnosis is, I plan to teach as long as I can. I feel like it would be possible even without speech, either with an electronic aid or teaching older students and writing most of the lesson. My principal is supportive and has told me she will do whatever she can to accommodate me.

[vmd]

I'm glad to hear your principal is so cooperative. I probably have the option of teaching internet classes, if I were to lose more speech functions.

[siuska]

Shatzie,
i am so sad to hear the news and wishes and prayers for you at Baylor...have they totally ruled out myasthenia gravis?

[Shatzie]

MG was what I originally thought I had, but according to my neuro, my extensive blood tests have ruled that out.

[Jamiet]

Sometime, MG is sero-negative, meaning it does not show up on Bloodwork.

Hoping for a miracle!

Rgds,

jamie

[siuska]

Bummer...jeez...i was hoping it was ME if you had to have anything...have you checked out www,als.net?
it's a non-profit organization who's sole purpose is to concentrate and find a cure for ALS...there are forums there that can help you with basic answers. There is also information on drugs/ research/ practical things...i have become a volunteer in fundraising (hard for an artist!). i am also interested in the research that is going on.
I found out there is no good data/statistics on PALS done at any significant level...i was really confused about this...because, this is usually done for any disease- it helps to identify a cause...i wrote about this in the forum and someone let me know there was a bill to obtain such data, but TOM COBURN is the sole block to this passing...He is from OKLAHOMA...i thought you should know this because you live in Oklahoma and your rep isn't repping you...i have a link to this forum Q and A


i am still waiting for answers too...i had an abnormal EMG with atrophy...plus i twitch and cramp so i am scared, but i found for me, being as proactive and looking at research helps.

[siuska]

sorry, don't quite understand why link to forum didn';t appear in post.
http://www.als.net/forum/topic.asp?TOPIC_ID=2314