Realllly hoping the docs are wrong

[flora]

About a year and 1/2 ago I noticed that I was getting clumsy; falling down stairs and tripping alot. I thought I must just be getting old (I am 35). I then started to have severe cramps in my right foot and calf while I was sleeping. Then I started having them when I tried to do my stretches. Growing up I was a gymnist, cheerleader, and on the swimteam so I have always been very flexible. I was shocked when I started to lose flexibility and called my mom. She laughed and told me "welcome to middle age). I called my doctor and made an appt. Everything seemed to be ok, she did a cbc and all. About 3mnths later I started to get a plucking sensation in my leg and face, though not painful it drives me nuts. My doc orders an mri and schedules with a nuero. He said my mri is fine and I am having panic attacks. I don't think that I am a panic attack kinda girl (or wasnt) but went with it. He put me on effexor, and my friends were mad. I started to get cramps in my right calf...he tells me it's just the panic attacks and to ask my pcp for some muscle relaxers. I fall down the stairs again, call the neuro, he says to watch where I am stepping. I start noticing that it is hard to walk up the stairs, my legs feel like there are weights on them and start to hurt by just the middle of the steps. Anyway, this goes on and on and on. I fall down the stairs again and hurt my back and get admitted. The neuro checks my reflexes, says I have hyperrelfexia in both legs and one arm.....on to about a gazillion tests, none of them fun (one of the docs was pretty nice to look at though). Doc came in with a bunch of other docs. Says we believe you have als and they leave. I get discharged from the hospital and my doc makes me see a pt and tells me I have to go see another neuro who specializes in als. I think that this can't be happening to me, I am to young. My kids are to young to lose thier mom. None of my friends or family is cool with this. And I just flat out don't have the time to die.
Now onto my question....could anything else be causing this? Oh yeah, now my left two middle fingers are curled toward my palm and it feels like they are attached to rubberbands pulling on them. Again, not painful (except for the cramps I am getting in my forarm) but really aggravating. Thankyou all so much for reading all of this and I appreciate any kind of info or opinion offered.:mrgreen:

[cheryilyn]

Flora,
You have come to the right place for info, There are a lot of knowledgeable people that hang out here. My advice would be to find an als clinic and go to them for an answer.
Best of luck to you.

[Jeliota]

Wow, you have had some "special" doctors. I'm sorry you are having to go through all this. If you go back through the posts here, you'll find plenty of people who had "textbook" ALS symptoms and then were diagnosed with something treatable.

Just try to hang in there until you get to the ALS doc and let him/her make the diagnosis. Those are the docs who really know their stuff.

In the mean time, don't panic and watch where you're stepping. That'll be $500.

[flora]

I wish my friends had your sense of humor. It would make this all a little more tolerable. Right now everybody just treats me like...well, like I'm dying. My mother and sister kidnapped me (for real) and my best friend hovers like a mama chick and tells me all the horror stories from the nicu where he works. My boyfriend is the only one who laughs at me when I trip and tells me I am entirely to blond and to polish.

[Peg B]

Hi Flora,

Yes there are other things that could be causing this. As has been noted above and by your Docs, you need to go to an ALS clinic. This is my story:
About 5 years ago(2002) I started having symptoms. I fell several times in classes (teacher consultant) my legs tired and I thought my arthritis was getting worse. I fell on black ice off the porch and ended up with a back operation. On October 31 2006 after going to a hand surgeon for atrophy of my finger and hand weakness he sent me to third neuro who told me I had ALS for sure.
He sent me on to U of M ALS clinic and I had the tests EMG and nerve conduction for a fourth time. EMG was abnormal for 3 limbs.(positive for ALS) I have right hand/finger atrophy, weakness right hand spreading to left, leg weakness, fastiulations, cramps and one borderline conduction block. But no sign of upper neuron problems, so I am DX with either Multifocal Motor Neuropathy (MMN) or "Atypical ALS." The advantage is I am getting treatment for MMN which is IVIG. My symptoms improved a bit - I can move my finger a bit, and type better but I cannot write much (I have trouble writing a check) but I have more energy and I am not worse. They say that the symptoms will show themselves eventually and one of the DXs will stand but in the meantime I am living pretty well and feel better. It is looking more like MMN as of August 30, but no new EMG yet.

There are other diseases out there too. Keep us posted. Have fun and don't worry-it doesn't help. My prayers are with you. Best Wishes, Peg

[CindyM]

Hello flora. Welcome to the forum. I am sorry for what is happening to you. I see you've already met some of our great members. This is definately the pace to come for information and support. We use humor around here a lot, too. Some of our long-time members have really funny stories about living with a body that has a mind of its own.

And several folks have been living with ALS for years. Peg says it best. try to enjoy your life and your family and let the health stuff take care of itself. Cindy

[flora]

I do try not to think about it much, but I have found myself wondering if dying like that will hurt. I am the kind of person who has control issues so when the docs told me.....well, after I figured out what als was (they only said als. Nothing else, no explanation, nothing) I started to make sure that my life isurance was up to date, I found out how much it cost to creamate me so I can prepay, made sure I had a DNR, blah blah blah. I have a few friends that are supportive but my family is nutso....like jerry springer crazy, just with more money and no trailer park. I still can't believe they actually kidnapped me though I guess I really shouldn't be that suprised. Thats the hard part, trying to get it through thier heads that there has been no official dx and to get off of me. Anyway, this is supposed to be a quick reply so I will quit !@#$%. I hope you are all enjoying the fall. bye

[liz]

OK Flora, I have to ask. How did your family kidnap you?

[jimercat]

Flora,

Very sorry you are going thru this! Hope it really isn't ALS. It may be something else and I hope the ALS specialist will clear this up for you.

The kidnapping thing does intrigue me also...

[Al]

Love your sense of humor flora. Keep it up.
AL.

[flora]

I told my little sis what the docs said. My mom called me and told me that my sister was in hysterics and that I needed to come down to Columbus right away so that she could see that I was alright. I fell for it. I got down there and my sister stole my car keys and told me that I was not going back to cleveland! She put me in a chair and started to put pillows all over me, under my arms, behind my back, under my feet! She decided that I was not comfortable enough in the chair and made me go to the couch, and put the pillows all over me again and covered me up with a ton of blankets and sweaters. I tried to beat her with one of the pillows but she just took it and put it under my feet. She and my mom were in the kitchen cooking and I got up to go to the bathroom and Les came running into the living room and said "what are you doing? Why are you up"? I said that I had to pee, so she followed me into the bathroom!!!!! By the time dinner was ready I was exhausted and had no appetite what so ever. I am surprised they didn't try to feed me. My sister was hanging on to me for dear life and kept knocking me over and then freaking out because I would fall. I had to drag her all over the apt. to find my keys. I escaped, with her crying and telling me that I couldn't drive. When I got home my mom called and told me that Les took my bank card so that I have to come back down.....I will let you know how that works out.

[Al]

Flora you and your family are a hoot. No disrespect meant. Keep us posted.
AL.

[flora]

The last couple of days I have been having some trouble moving my fingers. It's hard to pick up small thing or to button stuff. I am an interpreter for the deaf so sign language is something I can do in my sleep but now I am having problems making the letters. My two middle fingers keep wanting to pull in towards my palm and it actually hurts to make the r and u. Anywho...Everything that I have read says that ASL is not a painful disease but on some days my muscles hurt from cramps so bad I can barely walk and then some days the cramps are not so bad. My doc gave me a muscle relaxer but I try not to use it because I am worried that I am going to end up trying to sell my son's cats on the street for drugs. I really just think that the other docs are wrong cause I can still walk (as much as any blonde polok can) and sometimes I don't even need my cane. I know you guys said not to think to much about it until I see the spec. doc, but I thought maybe some one here might tell me about their experiences. Answers more than anything else will help me calm down a bit. I hope I am not bugging anyone.:confused:

[Peg B]

Hi Flora,

Cramps just plain hurt. Tonic water helps a lot (contains Quinine). See if it helps. Best Wishes, Peg

[liz]

Flora -

As for the good days and bad days, attitude makes all the difference. The ALS just does what it does. How good or bad of a day I have depends on how I direct my mental energy. Sure, there are moments when the "why did this have to happen to me" thinking gets a good grip. That's when it's time to find something outside of yourself to focus on and start looking for new things to do when old things must be given up. It's a hard disease to ignore because we must be attentive to avoid injury and manage symptoms. The challenge is to take charge so our days are not all about ALS.

Liz

[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 dx 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

[CindyM]

Tell us another family story, Flora! They are just too funny! Cindy

[flora]

I can't begin to tell you all how much this interaction has meant to me. I do have a crazy family, and friends that all care so much about me but I still felt as if I had no one who could relate to what I am going through. I try not to talk to much to any of them about it because everybody always sees me as the fearless kind of person and from experience I know that if I am worried then everyone else loses it.
Now about more family stories....I can't believe people actually get a kick out of them. But then I am an avid Jerry Springer fan, so I guess I get it. I could tell you about the time my sister and I met Tori Amos because my sister refused to come out of a tree claiming she wasn't used to earth's atmosphere, or I could tell you about the time les peed on a cop. Oh I know I will tell you something about me (I wouldn't want to mislead you into thinking that I was very unlike my family).
A couple of years ago I was with my two best girlfriends at the gym. I was on a treadmill and tiff and erica were on mills on either side of mine. The bottom of my sweatpants got stuck in the tread and I fell backwards off of it. My pants stayed on the mill and I wasn't wearing underpants. The guy that was SUPPOSED to be spotting for another guy was just standing there with his mouth hanging open. Erica calmly got off of her mill and walked to the locker room. Tiff did the only other thing a true friend could do; she stood on the side of her mill and laughed so hard that there were tears rolling down her face. I tried to get my pants out of the mill to no avail. I I gathered up my pride and walked to the locker room.:mrgreen:
I have not been back to that gym.

[flora]

My sis les just called. Her and mom told me that they need me to come down to columbus to help dad look for another car....sounds like a trap. :shock:

[CindyM]

Reminds me of a friend I had who, when seh was in college, rented a cottage by a lake with a bunch of her girlfriends. Well, the evening was warm and the moon birh=ght so they decided to take a dip in the lake, sans swimsuits. what they didn't know was that a group of college guys had rented the cottage next door. Well, the guys came home from a party and quickly figured out what was going on so they parked their car facing the lake, high beams blazing, and dragged out flashlights to boot.

All the other girls had big beach towels to cover them from shoulder to knees. But my friend had just a little skimpy hand towel. But it did cover her face, so that's what she did. With her face covered, and only her face, she ran for the cottage. Her reasoning was this: the next time they caught sight of her, she knew she'd be fully clothed and with no way to identify her face, they would never know who the naked girl was at the lake.

[flora]

When the plucking started a year ago I thought "well this is strange", but it didn't hurt so I just wrote it off as nerves (my son had just gone roaring into puberty). I didn't get them to much. Now it's a constant thing, going on all the time in my calves, feet, and thighs. It has started to happen in my left arm up by my shoulder and making my asl letters is getting hard.
Starting about two days ago I started to get a....I don't really know how to explain it. Like a tickling in my left foot and front of the thigh. Kind of like the feeling you get when you are on a roller coaster or going over a hill real fast, and my foot is vibrating. I can't see it I can feel it and it's driving me crazy. Do you have any ideas on how to make it stop?

[CindyM]

Rest makes the twitches and vibrations simmer down for me. Plus the doctor gave me quinine tablets and that helps a lot too. He said I could drink tonic water, which is made of quinine, but I'd have to drink it by the gallons in order to feel any effect.

[flora]

What is quinine? If it stops this infernal plucking I will drink it.

[MtPockets]

I buy my Quinine over the counter at my local drug store. I take two tabs in the morning and two at night. It does seem to help some with the spasms.

God Bless
Capt AL

[Peg B]

Hi Flora,

You can get quinine in Tonic Water. Faygo makes it the cheapest I've found, 86 cents and 0 calories if you get the diet version. I forgot to buy some and woke up last night and tonight with cramps. So I won't forget tomorrow. Think of a gin and tonic without the gin. Put a lime in it and it tastes the same. Best Wishes, Peg

[Al]

Hey Big Al. Someone posted that they couldn't get over the counter Quinine in their state. You too could make thousands of dollars by becoming a drug supplier to the stars. And these are legal drugs. No fear of jail. No fear of hits on your family or yourself. A great opportunity to get in on the ground floor of a potentially fabulous source of income and best of all you won't be called a scum bag scammer on sites like this. Imagine the untold riches you could have. Hope you're chuckling as much now as much as I was writing this. Have a good day buddy.
AL.

[MtPockets]

Alright, that's it's I'm a drug dealer. Only a small mark up on the Quinine.
Then again if they can't sale it in those states, probably illegal to mail it there. Dang I'm out of business already.
Me and my wife were laughing so hard we were crying. Picture me as a drug dealer. :mrgreen:
You made my day AL. :-D :-D :-D :-D

God Bless
Capt AL

[cheryilyn]

you guys are too funny. thanks

[flora]

I don't get it Al. It's probably a blond thing, I don't get alot of things.

[flora]

Ok. Now you guys are going to see just how blond I can be. A couple of weeks ago I woke up out of a sound sleep choking and coughing. I apparently swallowed my spit. Nice. I have been choking on the strangest things lately. Coffee, water, pop.....not anything solid (is soup solid?) just weird crap. It's not like I don't know how to swallow, I have been doing it for some time now without any supervision. It's kinda like....I feel like I am trying to breath and swallow at the same time. My mouth keeps watering alot and my jaw literally gets tired when I chew...this shouldn't be happening, have a very strong mouth from talking aimlessly for hours about absolutely nothing. Is this something I should be telling the ALS specialist when I go see him? How do I stop choking on water? Do I just swallow slower? And how do I get my mouth to stop watering? Is this even something that happens to people with ALS? I think the doctors are all wrong and can't wait for Dr. Pioro (the ALS spec) to tell me that I am right. I just don't think my symptoms match. I hear it doesn't hurt, well my legs cramp and my arm and hand cramp. They say that your nervous system is not affected but my legs will jump if you so much as touch my knees or feet. Any feelings, ideas, remarks? Do you want me to shut up yet?:-D

[cheryilyn]

Flora,
definatly mention every little thing to the ALS doctors.when is your appt? I know you said in Nov. I wish you the best of luck.

[CindyM]

Flora- why would we want you to shut up? Your posts are warm and funny and I always enjoy reading you. Who else could make a joke out of swallowing problems and choking troubles? Which, not to scare you, could be exlpained when you go to the clinic. That appointment must be coming up soon, right? Please check in with us after wards, no matter what they say. Hugs, Cindy

[flora]

You guys are so awsome! My appt. is on the 20th yeaaaahhhh. Can't wait to get this over with. Today I have to do something much scarier than the doc. I have to go to the mall and find a formal gown and a bathing suit for a cruise my friends are taking me on. I went yesterday and looked like a pot belly pig stuffed into a scrap of silk. So today I get to do it all over again....maybe if I ate a model first it would make me feel better (not that I am bitter you understand). Wish me luck with the dress. YUCK!

[Icanmanz]

Flora, I am so glad to hear that your friends are taking you on a cruise! Are you taking your sister with you, or is it just you and your friends? When and where are you guys going? That is nice! God bless you all!


Irma

[flora]

It's just me and my friends. My sister can't go, she has a shunt in her brain and 17 bolts holding her head on. She has alot of brain damage and the frontal lobe of her brain is dead. So no cruises for her. We are going to Mexico for 5 days. I have never been on a cruise before. I am very excited but also a little nervous. I hope I don't get sick.

[Midnight]

Hi Flora,

You are a funny one. It is nice to laugh a little, and it seems to be the best medicine, so thank you.

I do remember reading a post that said that saliva increase can be associated with ALS, because I believe people get botox shots to deal with it. Make sure you talk to your doc about it.

Does anyone have substancially decreased flexibility? Mine is really bad and I have always been a very flexible person too, so I am wondering if that is MDN, ALS, MS, Lyme, or anything other than getting old (I am your age, so I'd like to think I am not that old). You are the first person I have heard mention it, but mine is really, really noticable and i am not sure if it is because I am less active or what. I have the same thing happen when I do stairs..I cramp like crazy and I actually usually like to hop onto my knees QUICKLY to get off my calves.

And I also wanted to tell you that I think many of us have those type of vibration like twitches that are less noticable but drive you crazier than you already are.

The 20th is coming right up, so I hope you get good news :)

Last but not least...I have had tattoos (and had them removed), and I have also had an EMG. The EMG is NOTHING compared to a tattoo! So, don't worry a bit.

Best of luck to you!

[amywiller]

Hi Flora,
I am a speech pathologist and i would say, yes you should tell your practitioner about this new symptom. The things you are describing choking on are all thin liquids, which is a common consistency to have difficulty with. Each individual is different , but a good starting point for you to help deal with this is to tuck your chin toward your chest when you swallow the liquids. This closes off the airway a little more and makes it safer. Also stick with small sips. If you are still having difficulty with the liquids, you may need to begin thickening your drinks just a tad with a product like Thicken-Up or Thick-It, which is basically modified corn starch. A lot of pharmacies carry it and it has chart on the back of the can for mixing ratios. You probably don't need much, just thickening to "nectar" consistency helps a lot of people.
Hope this helps!

[flora]

Thanyou everybody for your help!

[cheryilyn]

flora,
how did your appt go?