Realllly hoping the docs are wrong

[crystalkk]

Hi flora,

Great attitude, You have a great family (like you said alittle nutty but at least they care) and it sounds like they really care.
It was horrible that the doctors in the hospital came in and told you that the way they did. Where you by your self?
When is your appointment with the ALS clinic? You need to see someone who specializes in ALS.
emercency room doctors don't always know everything.
Did they do an emg?
spinal tap?

what other tests did they do?

crystalkk

 

[flora]

At the time they told me I was in patient. My neuro and 3 other docs came into my room and told me. I had been having different tests for about a year. I hav had 4 mris, 3 of them were dye contrast, 2 ct scans, 6 dif cbc and other blood tests. Nothing was wrong but a little jerkiness in my right leg when hit. Thats why my neuro told me I was just having panic attacks. By the time he saw me again in the hospital I was having something called clonis in one foot and hyperreflexia in both legs and one arm. I now hav sustained clonis in both feet and my left hand and unsustained, intermittent clonis in my right hand. I don't know what any of this means but the one doc hugged me when he saw after the hospital stay. I have to say that it was pretty disconcerting when he did that. I didnt even know dr. new how to hug. when I was told my boyfriend was with me but neither one of has ever heard of als so we just thought it was something like ms (my mom has that). The docs didn't explain what it was. I called my friend who is an opt. doc. and he freaked. That was my first hint that maybe this was gonna be bad news. As for my family.....they are jerry springer crazy, just with more money and no trailer. My mom and lil sis watch wayyyyy to much life time tv. And my son woke me up 3 times in the middle of the night to ask me if I was ok and did I need anything!:?:

 

[crystalkk]

Floria,
You said your mom has MS, they didn't do a spinal tap yet.
Did the hospital do an EMG?
MS does not always show on a MRI.
You haven't mentioned anything about about atrophy or twiching which is a good sign.
Everything you are mentioning comes from being spastic (stiff) which is upper motor nuerons.
which can definetly be MS.
There is no specific tests for ALS, it is a matter of ruling everything else out. It does not sound like they even came close to ruling everything else out.
Did you tell the drs. that your mom has MS.
I have no diagnosed yet. But I first I thought I had MS (which has been ruled out) I have atrophy and you do not atrophy from MS. But through my research there is a 1 in 20 chance that if your Mom has MS you can get it.
I would take that on a silver plater over ALS.
How old is your son? He sounds very sweet.
Anything nuerological can take a very long time tio diagose, that's why you need to see ALS specialist.
He sees it everyday.

crystalkk

 

[flora]

Yep, they did the lumbar punc. I did tell the docs about my mom, thats what they were looking at, but when the tap came back ok he said it was just psych. I don't know what the signs for atrophy are so I don't know if I have it or not. I had to get fitted for an afo today because my right foot makes me fall cause it wont lift up all the way anymore. I do twitch in my face and my calf and now it's starting in my left arm. I am to see the als doc in Nov. to rule out als. I agree whole heartedly that ms would be the better option here (if anybody gets options as to what disease to have). I don't complain about anything that doesn't cause me alot of pain or it impaires my ability to function, and while the twitching drives my nuts it doesn't hurt. Maybe it's not really the same twitching, it's more like a plucking, like I am an overtite guitar string. The cramps are the only thing that really hurts bad. Like when I try to walk up stairs, my legs get so tired and just simply don't want to do it and then I will get these cramps in the front of my thighs. I have felt cramps like this before, but I was racing a run/ mountain bike split for 20 miles and I got a killer cramp in my calf. I am not running anywhere right now. My son is 16, yes he is very sweet. I got very lucky I got the boy I did cause I have met other people children and they suck. Mine doesn't suck so I really lucking out. He is still a teen however so I am probably going to need a thorazine drip before long, and I do alot of apologizing to my parents for what I did to them. I was a reeeeaaaallllyyyy bad kid and I have no idea how they managed to get through it without straight jackets...my son isn't anything like I was. NOTHING....I probably would have sold him by now.

 

[mamaoftwo]

You know Flora, everyone is so amazed by your great sense of humor and your spirit. I am FLOORED by it. You are so incredibly upbeat in spite of all this news coming your way. Sure the docs could be wrong and lets all hope that they are but whatever this is, you have already more than demonstrated that you have the strength of character to face anything. What I would give to have just one ounce of your resilience. Incredible. You are an inspiration.

 

[crystalkk]

flora,
It sounds like you have ankle drop.
Atrophy is when the muscles waste away they weaker and get smaller.
What about and EMG test, that is when they stick the needles in your muscles did they do that test.
Twitching can also be from the anxiety and stress.
I beleive you do get that in MS also.

crystalkk

 

[flora]

IS THAT WHAT THAT TEST IS! The als doc is doing that in Nov. Nobody mentioned needles to me. !@#$%^&*()(*&^%$#%^&*()(*&^%$#$%^&*()_)(*&^%, whew, now thats out of my system...no wait. Is it worse than having a tattoo? I really hope that it's not anything at all. I am supposed to be going to Ghana next year to volunteer for three months and I would love it if the only thing I had to worry about was avoiding the guinnie worms, bot larva, and AIDS. So are they going to electricute me? My daughter did that to her hamsters trying to study mammal reactions to low voltage electricity. She was very young at the time....their dead and now she is forced to do all of her experiments on her brother. She will probably want to come with me to watch and document.
I was told by a shrink once that my sense of humor was just a cover up for something much deeper. I am still laughing about that. Most of the time I just take it as it comes, but the other day I fell down the stairs again and I had a temper tantrum. My son is stalking me now so I am gonna get off of here. I will try to come back later. I hope you are all finding your strength today (and something, or some one to laugh at).

 

[Jeliota]

You know Flora, everyone is so amazed by your great sense of humor and your spirit. I am FLOORED by it. You are so incredibly upbeat in spite of all this news coming your way. Sure the docs could be wrong and lets all hope that they are but whatever this is, you have already more than demonstrated that you have the strength of character to face anything. What I would give to have just one ounce of your resilience. Incredible. You are an inspiration.

That's because the apple (or nut) doesn't fall far from the tree, and Flora comes from a one crazy tree. :-D

Three cheers for Flora! I'd like to go eat dinner with your family. You guys sound like lots of fun. I WILL NOT participate in any kidnappings, though. Have to draw the line somewhere.

 

[CindyM]

Hey flora- I still have the image of you trying to beat your sister with one of the pillows she was pampering you with. Don't fret about the emg. I've never had a tattoo but I've had lots of emg's and they aren't all that bad. And the local docs can be wrong. Usually they don't recognize MND when they see it but every once and awhile they guess they see it but in my case the ALS clinic says not so fast. cordially, Cindy

 

[flora]

Any kind of family activity is an event. But it might be better to watch from remote satilite tv than actually be there. I was supposed to go down to columbus last winter and decided not to cause my tires were bald so I called my mid sis leeney (she thinks she is a tree. No joke) to let her know to tell mom and les. Anywho, she must have been hybernating (do trees hybernate?) or she may hav just been drunk but she told my mom and les that my tires were flat. They had been watching Lifetime tv and in the next four hours decided that I had broken down on the highway and was kidnapped by a serial killer and cut into little pieces and sprinkled along the interstate. They called every hospital and police station in complete hysteria. Anyway I get a knock at the door and it's a cop. He says "are you chantele caccavello"? "CALL YOUR MOM". Very typical, and if it were somebody else's family I would be rolling on the ground laughing. There mine however, so the most I can do is hope to be put in the witness protection program. I am going to give my son some brownies (he is walking back and forth in front of the stove). Goodnight to you all. I hope you have good dreams and restful sleep.

 

[Jeliota]

Any kind of family activity is an event. But it might be better to watch from remote satilite tv than actually be there. I was supposed to go down to columbus last winter and decided not to cause my tires were bald so I called my mid sis leeney (she thinks she is a tree. No joke) to let her know to tell mom and les. Anywho, she must have been hybernating (do trees hybernate?) or she may hav just been drunk but she told my mom and les that my tires were flat. They had been watching Lifetime tv and in the next four hours decided that I had broken down on the highway and was kidnapped by a serial killer and cut into little pieces and sprinkled along the interstate. They called every hospital and police station in complete hysteria. Anyway I get a knock at the door and it's a cop. He says "are you chantele caccavello"? "CALL YOUR MOM". Very typical, and if it were somebody else's family I would be rolling on the ground laughing. There mine however, so the most I can do is hope to be put in the witness protection program. I am going to give my son some brownies (he is walking back and forth in front of the stove). Goodnight to you all. I hope you have good dreams and restful sleep.

You are the best poster ever. If your sister, the tree, got ALS and fell down and no one was around, would she make a noise?

 

[Icanmanz]

Good God, flora! Never a dull moment around your house, eh? I was having a really bad day today, until I read your post! LOL! I loved the one about your daughter and the hamster! I can now see why the hamster is dead! Did she electrocute the hamster? Wow! don't let her get anymore hamsters! LOL! You have a good night, oh yeah, and good luck!

Irma

 

[crystalkk]

Flora,

I'm sorry that I scared you with the EMG thing. It's really not that bad. I already had 4 of them. I guess I can't beleive that they even told you you have ALS without even doing an EMG. what is your nuero's speciality? Is he just a general nuero?

I love your family stories, I think I need some of that around here. Just remember they really do care about you.....

 

[Cornelia]

Hi Flora, can't imagine they would hand you a diagnosis without an EMG. I've had an
EMG, it doesnt hurt. Mine took about half an hour. Good luck on yours. I will say
a prayer for you that you don't have ALS. conrelia

 

[MtPockets]

Flora, WOW, your stories are wonderful. I laughed so hard at your wonderful comments about your family. You could be a stand up comic with a family like yours.

Keep up the great sense of humor. It will help you weather any storm.

God Bless
Capt AL