Back from Appt....!

[Jamiet]

Well guys and gals......thank you all so much, you are all truly friends......i'm reduced to tears here...

Ok....met with the dr's intern first, i think the dr. has figured me out and sends the intern in first to let me calm down, get my blood pressure under 200 / 150..lol...i did manage to calm down a bit though.

They did all their littel strength test. I'm still strong. Long story short...the doc comes in. This time, there were many more questions. She saw the atrophy in my pectoral, tongue. the quetsions were really pointed....towards weakness, stamina and cramping. She was particularly concerned about exercise tolarance, family history of neuro problems, ect ect. Of course, i told her the story.....i get exhaused easily, overdo it easily and are crampiong all the time.

Again....NO TWITCHING in the appt. Literally, my muscle uner my armpit has twitched for 4 days, all the way up to 5 mintues prior to appt. and do you know... that darn thing quit. Nothing else would twitch either. they are twitching again now..lol

Ok, so they hadn't scheduled the biopsy, she asked why i didn't call an schedule it...well i called her nurse 3 weeks ago to schedule and the nursed to me tehy would schedule on the visit.......so, i'm overnight in houston...biopsy @ 2:00 PM CST tomorrow......and for the superstitious ones....Tomorrow is Lou Gherig's B Day.........coincidence huh....

She had a different look at this appt....like yep, something is wrong. She said, no EMG, with the biopsy, it will tell us what we need to know, EMG will be a waste of time at this point due to biopsy. And my reflexes were again, off the charts, so brisk, she won't stand in front of me and she clearly remembered last appt. when i kicked the living crap out of her, i was courteous enough to tell the resident not to stand in front of me when she tapped my knees, that if she did, she would be sorry.

My left arm reflexes are less than the right, so some unsymmetrical in the arms, knees are the same and jump like a cat that's been scared out his mind and jumps about 4 feet before running for cover..

She mentioned about 4 different things....diseases....of the neuro-mus junction, nerve juncition, and a few other things mumbled off, taht we're looking 4.

My wife and i specifically asked her if she was still 100% sure it wasn't ALS..... we've now moved from 100% sure to she is still "pretty confident" it's not... Maybe i'm reading too far into it, but it's sounding more like retracting a little.. But she did say she is pretty confident is NOT. She did however say, something is wrong and we just don't know what. Something is going on, it's not right and we will know soon. It sounded to me shes more concerned about a disease of the muscular junction, whatever that it....sound like it could be 100 things.

so...i'm really nervous again....biopsy tomorrow...more waiting.....results in about 4 weeks. She said it will take a while becuase she has to test for everything.

So...thanks to all of you for thinking of me.....i'll be crying tomorrow about this time........(I'm a whimp when it comes to cutting and shots)

Regards to all my friends and thank you!

Jamie

 

[zac111]

thats great news i hope they figure out whas wrong and mabey its something that they can treat are something that will get better soon.

 

[lhagsjr]

Jamie

so now we are in the same exact situation. This is what my neuro is saying/DX me with. He states its 100% not ALS. He states I have a "muscle" disease and not a nerve problem or MND by the results of the EMG. Im trying my best to believe him because he really is an expert. He runs the ALS clinic at the University of PA. He said the EMG/Nerve Studies were 100% clean for ALS...

The one part I found a little confusing is the biopsy situation(which u know Im having done as well.) When she tells u it will show everything what does that mean? If you have ALS they will be able to tell? I was told it was better for finding OTHER diseases not ALS. Because the biopsy shows problems with the MUSCLE not with the nerves...

Oh well, Good Luck again tomorrow.


Sincerely,
Lou

 

[kman543210]

I hope your muscle biopsy tells something. I had one last year after my first EMG showed abnormalities that were "non-specific". My muscle biopsy was normal. The procedure wasn't that bad. Once they numbed it up, I could barely feel the as they were going through the skin, and couldn't feel anything as they took a piece of the muscle. It did hurt after the numbing went away, but only really bad when I walked on it. I chose not to take any pain medication other than acetominaphen.

My neuro too said that she didn't think my EMG results this year showed ALS, and she is an ALS Specialist (medical director of the Portland ALS Clinic). There were no abnormalities when she looked at my arms or tongue, but just last week, my arms became weaker. My swallowing became worse on Friday just within a few hours, and now it's difficult for me to even type this (my symptoms come on pretty suddenly). I finally got another appointment with her tomorrow, but I didn't know that it was Lou G's b-day. Good luck on your biopsy.

 

[CindyM]

Good luck Jamie and kman. Maybe the fact that it's Lou's Birthday will mean good luck! Maybe his spirit is watching out for both of you! PS. If you join my "undiagnosed with anything specific but clearly not right" club we'll have to cheer ourselvs up with a big ice cream party or something! Maybe al will break out the merlot! regards, Cindy

 

[ltr]

Hey Jamie - You're definitely reading too far into her words. You and your wife asked if she was still 100% sure it wasn't als and she said she is still pretty confident it isn't.....that's good jame, really good. Just a play on words.

Your biopsy will show what is going on. I am demanding it! No really, I am really confident at this stage in your illness, it will show what is happening.

Lou and Jamie I think, at this point we are all in the same boat. My biopsy, so far, has shown a muscular problem, like Lou's and Jamie your doc is thinking it too. That would explain why our weakness and atrophy isn't progressing as quickly as our buddies who are pals. Cindy, I think your biopsy would diagnose you at this point too. You may be denying yourself treatment by not having it. Something to think about.

The waiting is hard, but I got a call after the first week, though the next couple of weeks are to further delineate the muscle sample for a more specific diagnosis. It's scary to get the diagnosis, no matter how prepared you are. But, I still feel it's for the best.

Good luck tomorrow. And when you're feeling light-headed, weak in the knees, nauseated, sweaty and your arms tingling......remember panic/anxiety won't kill you and you're in the best place you could be to faint! Just kiddin, you'll do great! Leslie

 

[pldo]

Jamie,

I hope that is all goes well. Your child is so cute in the pictures! Let us know what happens.

 

[brooksea]

Jamie,

Hope you got thru your muscle biopsy procedure without any complications today!

Hopefully the doc will be able to give you some better news.

CJ

 

[hboyajian]

Jamie, I hope all went as well as possible with your muscle biopsy. It must be hard waiting that long for results. Try to do something relaxing for yourself this month while you recover from the procedure.

 

[Carolcora]

Jamie,
Are you dizzy or have no sense of balance? I am and no will look at it or treat it. They tell me to use my walker and don't fall. I have never had a muscle biopsy. So I don't know what to do about the dizziness.

Carolcora

 

[puzzled36]

Hey Jamie! Hope everything turns out well for you! Just FYI, it takes 4 weeks to get all the special stains back, but the surgical pathology report on your muscle is usually done in 2-3 days. It will tell you if there was atrophy, various fiber sizes, increased number of vacuoles, etc. that can rule in or rule out a lot of things. You might want to call and see if you can get your doc to give you those results. Take care.
Gina

 

[ltr]

Hi Carolcora - sorry that the docs aren't helping you out. Do you have weakness along with your dizziness? Any kind of muscle problems? Could you be suffering from an inner ear problem? My advise would be to demand that the doc investigate your balance problem. Sounds like he thinks it's no big deal and you don't feel the same way. Let the doc know! Good luck~Leslie