New, scared and confused also
Hi, Let me start by first apologizing if I am not sending this correctly (Sorry).

I Found myself here trying to find answers to what has been going on with me for the past 5 almost 6 months now. I guess I should start by explaining a little about myself before I start rambling on about what has been happening to me. I am a 36 year old female from New Orleans, Louisiana, married and have one daughter age 5. I am currently under the care of a neurologist who I feel is dragging his feet or maybe I feel this way because I am scared and do not know how to prepare my family or myself for the future when I do not know what the future may have in store for us. I have undergone extensive blood work all were negative. Had MRI with and without contrast of brain and c-spine only revealing herniated discs at C4 and C5, 24 hour urine test negative, and I have also been tested for Lyme disease along with Wilson’s disease need-less-to-say both were negative. So due to process of elimination where or what should I do next. My gradual decline is terrifying me and yet there or still no answers.
I suppose a brief synopsis of my symptoms would be appropriate, because I suspect and I believe my MD. Also, suspects ALS but is not finished using me as his personal pin cushion. Okay it all started the middle of July 06 when Right arm and hand were entirely numb, cold to touch, swollen and turning colors. Went to General Practitioner thought it could possibly be pinched nerve in arm, went back 1 week later and referred to Rheumatologist , thought auto-immune disease like Lupus, Scleroderma etc.... all test neg.
I then started with tremors in right arm along with numbness in left foot in toes, difficulty walking, and slurred speech along with trouble swallowing. Referred to Neurologist that was 5 months ago and a noticed general decline. I cannot drive anymore, weakness in leg, foot, arm and hands with increased numbness in right hand and fingers. In the past 2 weeks have noticed my breathing becoming a struggle along with burning in my left foot and right fingers along with cramping under my right and left rib cage. My speech is okay but have problems pronouncing some words. Eating and drinking lately has become a very careful task because certain foods and liquids seem to get caught have way down. Have not worked since Aug. 06 due to limited ability and or difficulty in walking (Become exhausted very easily). I have many more symptoms/problems but no need to bore. I guess my question is where do I go from here open to any suggestions. I am really scared and confused! Any ideas on what this could be would also be helpful. I am going insane with the not knowing.

Thank you in advance and God Bless,
Ellisa
http://www.alsforums.com/forum/images/statusicon/user_online.gif

Hi Ellisa. Sorry about your problems but a lot of your symptoms don't sound like early onset ALS. You have a couple that might be but the numbness and swelling and turning colors sound more like a spider bite or scorpion to me. Has your Neuro suggested an EMG or NVC test yet? Try not to worry (hard I know) until you get more tests. AL.

Hi Al,

Thank you for the reply. But the swelling and color changes did not last long maybe one to two days. Have appointment tomorrow going to suggest those two test. Mt.Pockets has told me has well to ask for them also. What exactly are the early signs of ALS. Oh Have been bit by spider in spring of 05 in Leg and let me tell you not a pretty site, it left a hole in leg due to infection. Now a scorpion you have got me there! (lol)

Thank you again

Ellisa

-have an appointment tomorrow with neuro-

Let us know how you make out. I was told when first diagnosed that the most common signs were dropping things , tripping or stumbling and general weakness. I didn't have that at the time so the Neuro didn't think I had ALS. Fooled him didn't I?

Most certainly will do. This site is wonderful it has really help relieve some of my anxiety. Keep up the good work.

thanks again Ellisa

hi Ellisa, Iam 37 and your story reminds me of 4 years ago and could be about me! Keep your chin up and foucas on today.

ms.illini,

Thank you for your support. Went to neuro appointment today and need-less-to-say more blood work not quite sure what was order something to do with the muscles. Also have an nerve conduction test for Dec. 18th.
But still can not get Doctor to give me the slightest hint of what he thinks it may be just more test and waiting.

Ellisa

Ellisa -

I think not knowing is definitely worse than knowing even if what there is to know is bad. I strongly suspected beforehand that I had ALS and actually felt better when it was confirmed because then I knew for sure what I was dealing with.

Liz

He probably doesn't want to freak you out with a bunch of "It might be this" or that, so you just have to wait and try not to freak out and don't get carried away doing research. You will find some sites that will scare you and some that will try to take your money. Be careful. AL.

Ellisa I am my husband's caregiver he was diagnosed with A.L.S., on October 2005, but started with symptoms on March.

He took a lot of test and all came out negative, so what was left was a positive A.L.S. Dx. I thank God I came up with these forums and these wonderful people, specially GrampAL, who gave me a welcome message and has given me support.
I am from Baja California, Mexico.

May God bless you and I will be praying thay you don't come with an A.L.S. Dx.

Paty

P.D. I've made some friends and we e.mail each other for support.

Thank you all for the great support and information. But I have to agree that it the not knowing and waiting that is the most scariest and frustrating part for me. If I knew what life had in store for my family in me then we could prepare and deal with appropriately, But how do you prepare when you do not know what your life is going to be like the next day? The hardest part of waiting for me is what to tell my 5 year old daughter when she ask her mommy to take her to the park, play hide and seek, or just to take her to McDonald's, I CAN"T TAKE HER! She just wants her old mom back will she ever return I DO NOT KNOW. I have stopped trying to find answers to these question and have started preparing myself mentally for what may be. I am so grateful I have found this forum at least I know there are people out there who can relate to what I am feeling. Thank you all so much!!!!


Al-Have stopped looking for research like a crazy woman on the Internet. The only place I go now is this website for the answers to my questions and concerns. Because some sites will scare you death. Thank you Thank you Thank you.


God Bless
Ellisa

Hi Ellisa. We don't claim to be the smartest people here but we are some of the most caring on the net. We will try to help you as much as we can and try to steer you in the right direction when you ask questions. We're not doctors but we live it every day so have a pretty good idea of what is going on and a lot of us have done quite a bit of research and scared ourselves half to death so you don't have to. Have a good day. AL.

Al,

The Support and caring her is wonderful. I Do have a Question to ask.

Tried on a Pair of shoes yesterday that last winter were to small (size 71/2 wear 8 to 81/2) well low and behold tried them on yesterday to go to Doctor they actually fit almost to big. It is like I lost weight in my feet. I also find that my wedding ring and watch are becoming to big. Have you ever heard of this happening like hands, wrist and finger are shrinking. I know this sounds wild but just wandering. Told MD yesterday Looked concerned but no answer. Thank you again to responding to my rambling I really appreciate it.


Ellisa

Ellisa -

I had myself so worked up by the web research I did before my first neuro appointment that the doc took one look at me and put me on Xanax. As if that wasn't enough, three days after my final dx I had a huge panic attack and ended up being sedated in an ER for four hours until I could stop hyperventilating.:| This process definitely does not bring out the best in us. I'm still feeling pretty edgy just waiting for my first appointment at the ALS Clinic. Can't help but worry if there's even more bad news coming. What a roller coaster ride.

I see Al recommends Merlot but I've got a preference for cheap Amercan whiskey, a glass or two of which in the evening works better than the Xanax. Better still is snuggling up with my seven year old and watching the Simpsons on TV. We just have to find what relaxes us and make it a priority.

Liz

Liz,

Well Merlot and cheap American whiskey I don't drink but may have to start (lol). The Doctor put my on Limbitrol yesterday to help me sleep at night.

Hi Ellisa. I did notice my wrist shrinking around the time of diagnosis back in 03. That was one of the things I pointed out to my doc at the time. Had to move my watch up a notch. He said well you've just retired so you probably aren't getting as much exercise. Little did he know then. Don't throw those loose shoes out yet. Give it about a couple of years and you'll get the foot swelling and they will fit like a glove again. LOL. AL.

Al,
To bad nothing else is getting smaller (lol). I'm glad to know that I was not imagining things. Is there in reason for why this happens? For about week now have been having burning sensation in fingers, feet and forearms is this common? Right thumb start twitching last night more annoying than painful. Sorry for all the questions but no one seems to what to discuss these symptoms with me Assume I am being a hypochondriac but they for get 5 months ago I could take care of myself now I need help almost to wipe my butt (LOL). Now dose that sound like a hypocontriac I tell them and they just laugh. Thank again for your quick responses I am new here so it is nice to now there are people actually reading my crazy outburst, I am so glad I found this site it has been a great blessing.
Ellisa

Hi again. The getting smaller could be just plain old atrophy but without a diagnosis , who knows? The burning sensation is a bit different. I myself never had this but some here have reported it but not very often. Could be something else going on. AL.

Ellisa -

My feet shrunk a half size within the last six months and coincidentally this is when I started experiencing symptoms (weakness) in my feet/lower legs.

Al -

What causes this foot swelling that I keep reading about?


Liz

Hi Liz. From what I read the muscles squeeze blood back up to the heart. When you lose muscle due to atrophy you don't exercise as much and the less muscle can't pump as much. Also you tend to hold a bit more water as you sit more. Circulation can be cut off or be lessened by the angle we sit in chairs. It is a vicious cycle. Ain't life grand once again. AL.

Well I am glad to know I am not losing my mind. Thanks Liz and Al!!!!
I am going next week to see another doctor to see what she has to say about what is going on with. Maybe she can give me some answers. Just a little advice should I bring previous test results or let her run all new ones.

Ellisa

Hi Ellisa:
You may have heard this before, but ALS is usually diagnosed by eliminating everything else (at least up here in the frosty, currently wet, north it is). So a lot of testing is involved to make sure that everything else is ruled out before you get the word. We even had a second opinion do some of the same tests to confirm the diagnosis. I know that it's tough waiting, but, who knows you might be luckier than others of us here! In the mean time it might be worth investigating the locations and opportunities in your community for ALS treatment. ( clinics, OT's and PT's as well as community health care stuff)... just in case!
Good Luck

CHeers

T.

BOTH!

Liz

Liz and T.Bear,

I am just so tired of being stuck with needles (can you believe when I was a child nurses would draw straws to see who would give me my monthly allergy shots I would run around office, hide in closets just not to get a shot) now it is like second nature I sometimes think I do not even feel them. T.Bear just a little overwhelming right now. Koo-toes to this site and the people I have only started posting this week and I already feel at ease with allowing total strangers to read and respond to my feelings and concerns about what I am experiencing.


THANK YALL SO MUCH,
ELLISA

Hi Ellisa. If you go for a second opinion and take the other guys test results for the blood and MRI and spinal tap that would be ok. I would ask for new EMG and NVC tests. I have seen different operators of the equipment get different results so if the new doc uses old information he'll probably give you the same opinion. I could do that for you. I'd insist on new tests even though they are not fun. Just my opinion. AL.

Gee, Liz. I was taking Grampa Al's advice about the Merlot but now I see I need to do more research! I'll let you know how the cheap American whiskey works out! Take care and have a good day. BTW, are you doing anything special this weekend? They said at first it was supposed to rain but now they say only partly cloudy, at least here in New England. ALbany weather gets a little hairier sometimes, though, am I right?

My 11 year old son is in his 6th grade play tonight - I'm really looking forward to it.

Hey Al every opinion counts and that's what I need right now.

Funny thing happened to me this morning. Wanted to get a bit of fresh air so my mom put my wheelchair (Can still walk but not very far, I use it when I have to go places that require a great deal of walking, easier also on my husband and mother they do not have to worry about me falling plus it is alot faster) on the back porch so I could enjoy this beautiful weather. It is so relaxing and peaceful to to watch the red birds in the back yard along with the squirrel's scampering around for acorns. The weather right now is beautiful about 65 degrees (cool), Sunny not a cloud in the sky with a pleasant breeze. When I decided to go back inside I could not seem to lift myself out of the chair. It was like my legs did not want to work. Had to call my mom to come and help me out of chair which was a real task because not only could I not get my legs to work but barely had the strength to wrap my arms around my moms neck to get up. Finally after a few times at trying we managed to get me out of the chair. We both were in stitches about the whole situation. My Mom said "to bad we were not recording the whole thing because we could have won $10,000 on Americas Funniest Videos". I have to admit it was pretty hilarious but scared the h*ll out of me. Do these types of things happen with ALS or not? If so why? I know I am full of questions put trying to gather as much info as possible so I can better prepare myself about what to ask 2nd MD. next week. Thank You

Ellisa

Yes my dear as they say "stuff happens" Some days are good days and others are not so good. Some days my legs and hands are not too bad and others I have trouble holding a spoon let alone walking. Just another fun thing about this miserable excuse for a disease. Better than that I was at a party a while back and couldn't get off the toilet and of course had locked the door. Now that would have been funny seeing me twisting and turning on the toilet trying to get something to push up on to get up. LOL. 65 is cool? My god woman we won't see 65 again for at least 6 months. Count your blessings. Although when it's 100 and humid and only 80 here it's not bad. Just a matter of perception I guess. Have a good weekend. Ours is cloudy rainy and about 40. AL.

I think you are ready for a new thread title. How 'bout "Baffled and Just a Little Nuts"?

Liz :)

I agree Liz I am baffled but have always been alot nuts (LOL)!!!

The weather here right now is so beautiful. This weekend should stay between 65 and 70 degrees, sunny and a little breezy with no humidity. That is the key down here no humidity. Winters here are very mild, except for Christmas 04 when it actually snowed on Christmas Day. First time my daughter and myself have ever seen snow. We thought it was a miracle but I feel now it was God's way of allowing us to enjoy and to realize just how precious the things we take for granted every day really are. For you see I live about 50 miles out of New Orleans in a place called Belle Chasse (Plaquemines Parish) and grew up in the same parish. Well on Aug. 29 05 Plaqumiens Parish was the first place Katrina hit. Needless to say Everything I have every know was gone in a matter of hours. Katrina devastated and sill is devastating our lives everyday. The only town left out of eight was Belle Chasse. Our Parish was nearly Knocked off the map. Our Parish is the little strip of land sticking out into the Gulf of Mexico (the boot part of La.). Yes people due live there. I a m living proof. So when it snowed that x-mas it was the last beautiful memory my family would enjoy at the home where I was born and raised. which now is only slab. So we are hoping for a mild winter this year, Because
snow around here means prepare yourself for the summer. LOL. Sorry about my long winded description about what the weather but when I start typing it is hard to stop. Just be glad you only have to read what I have to say and do not have to listen to me I am quite a motor mouth as my husband would say. Thanks for the ear.


Ellisa

Ellisa, Girl I am on my way south!!!!!!! Just kidding, Today is the first rays of we have seen all week. We are sitting at 45 thank God there is no wind (blows all the time flat A** ground). I have been reading your post and want to let you know I have been through the feet thing and like Al said swelling will come. I still get the tingly hands and other parts, but it comes and goes. Everything seems to be working that way in me. I will have difficulty with hands for a few days then it get some what better for a period then it starts over agin. As for you needing all the als info , this is also a phase but an important one.The more you know the easier it is for you ask and understand your questions. It is very important to make your care takers and Medical people know how and what you are feeling . It is also ok to have bad days, but be prepared for theirs too.(LOL) I kind of have run on mouth Have Good Weekend

Hi guys.

So my son had is 6th grade play tonight and he was totally cool. Not the star, mind you, but he had a few lines, ballroom danced with girls, and did this hip wiggling move during the chorus numbers that totally cracked me up. :-D He has always been kind of quiet and reserved so it was great to see him open himself up to a new experience and enjoy himself.

I love my kids.

Liz

So Ellisa -

If your old home is a slab, where are you living now? We hired a Katrina refugee to work for us here in upstate NY. He left Louisiana very reluctantly so there must be something great about living down there. I'm with ms. illini, maybe we should head south for a visit.

Liz

Hi Liz,
Sounds great, tell all your friends to to come down south it would sure help out with the recovery and our much needed economy right now.
I promise you will not be disappointed the people are great, the food is out of this world and we have one of the best places to fish in the world.
In Belle Chasse where I live only received minimal damage (Wind and minor Flooding) our roof came off and we lost all of our belongings, But my mom who lives in Port Sulphur and where I grew up which is about 30 mins from Belle Chasse is where the eye of the storm came in and left only the slab on which her house sat. My husbands family who also lives in Port Sulphur lost everything also. I guess the reason why we want to live here is because it is great place and it is all we know it is our home. The pros of living here by far out way the cons of not wanting to live here.
It sounds like your son had a great showing last night and is going to be quite the ladies man LOL.


God Bless
Ellisa

.... 65 is cool? My god woman we won't see 65 again for at least 6 months. Count your blessings. Although when it's 100 and humid and only 80 here it's not bad. Just a matter of perception I guess. Have a good weekend. Ours is cloudy rainy and about 40. AL.
Al, on days like this my heart goes out to my brethren in central Canada. Here in Paradise East (aka St. John's) it's 19° (67° F), sunny again and not a breath of wind. Like a nice day in July but without the black flies. I give thanks to Mexico and its greatest export, the Gulf Stream.

Yes I know. I saw the national weather last night and wondered what the heck is going on over there. Warmest spot in the country? Something is wrong with this picture. It is just above freezing here and Lee and the kids are putting out the Christmas reindeer andI wouldn't go out because I stiffen up like crazy in the cold. I'll stay in and watch football thank you very much. AL.

Football sound great "GO SAINTS"! I do not know if I could function with weather that is 19 degrees. Have had something strange happen today-
my tongue is completely numb, does this sound unusual to you all?

Ellisa

... I do not know if I could function with weather that is 19 degrees...
EllisaHi Ellisa, we use Celsius in Canada so 19° is the same as 67° Fahrenheit in your scale. I was just bragging to Al about our weather. Gee, 65° does seem cool compared to 67°. Come on over and warm up.

Yes I know. I saw the national weather last night and wondered what the heck is going on over there. Warmest spot in the country? Something is wrong with this picture... AL.I moved here from near Kingston, Ontario 30 years ago and was struck by how warm the winters are here. We get lots of snow compared to Kingston but it stays mild nearly all winter so we don't have days when it's too cold to ski or when cars are hard to start. My daughter went to university at Trent and never adjusted to the Peterborough winters. The downside is they don't know when to quit and we can easily have a snowstorm in May.

Well at least we don't get snow in May but we had some here the week before Halloween. Crazy weather. AL.

Weather caught up with us last night. Freeze warning, here on the Mississippi Gulf Coast. Guess I've got a bunch of dead plants outside right now, because my wife did not move any inside for protection.
We didn't see the weather too busy enjoying two of our 10 grand daughters. Of course my wife had to go shopping, and get them all a couple of outfits.
She SAVED me a ton of money, $$$$$$$$ favorite saying of hers or is that for all wives??

God Bless ALL
Capt. AL

John1- Thanks for the info. So what temp. would it be if it were freezing up there. Has bee awhile since I had to convert Celsius to Fahrenheit, plus math has never been one of my favorite subjects.

Al-I was to here that you had a great time at the party. By the way when you mentioned football is it the NFL or another league up there?


Mt.Pockets-Sorry that freeze caught up with you. Here on the South shore just cold but The North shore they did have a slight Freeze overnight. The wind here is the killer cuts though you like a knife, the windchill makes it feel so much colder than it is. I can not stand cold weather. I am sure the two grandchildren enjoyed the cold weather along with your wife they got to go SHOPPING.LOL


It good to here that everyone had a safe and nice weekend.


Ellisa

Hey Al every opinion counts and that's what I need right now.

Funny thing happened to me this morning. Wanted to get a bit of fresh air so my mom put my wheelchair (Can still walk but not very far, I use it when I have to go places that require a great deal of walking, easier also on my husband and mother they do not have to worry about me falling plus it is alot faster) on the back porch so I could enjoy this beautiful weather. It is so relaxing and peaceful to to watch the red birds in the back yard along with the squirrel's scampering around for acorns. The weather right now is beautiful about 65 degrees (cool), Sunny not a cloud in the sky with a pleasant breeze. When I decided to go back inside I could not seem to lift myself out of the chair. It was like my legs did not want to work. Had to call my mom to come and help me out of chair which was a real task because not only could I not get my legs to work but barely had the strength to wrap my arms around my moms neck to get up. Finally after a few times at trying we managed to get me out of the chair. We both were in stitches about the whole situation. My Mom said "to bad we were not recording the whole thing because we could have won $10,000 on Americas Funniest Videos". I have to admit it was pretty hilarious but scared the h*ll out of me. Do these types of things happen with ALS or not? If so why? I know I am full of questions put trying to gather as much info as possible so I can better prepare myself about what to ask 2nd MD. next week. Thank You

Ellisa
Wake up everyone! NIGHTOWLS (lol:-D ) Elisa we all understand what you are going through. My daughters are 27 & 22 3grands I'm 53. My heart goes out to you. This believe me this is the hardest time, not knowing ,think you know ,don't or do want to know. :confused: . I will tell you I owned a day care, and believe me children just want your love don't worry about the things you can't do anything about. Live today for today God will take care of EVERYTHING ELSE, its not always easy, I don't mean to say it is. I, like you ,was going out of my mind. I told the LORD one Sunday am,you made me you know my fears and GOD I NEED YOU TO TAKE FEAR ANXIETY AWAY FROM ME AND GIVE ME PEACE. Now thats not to say everyday is a breeze, it's not but bad days I cry OUT to him and the PEACE comes. I don't mean to sound no-it-all I don't. But, been dealing with this long enough to know I can only pray. I so hope this helps you. Remember, ALS does different thing to different people. And many diseases memic ALS except for slurred speech I haven't found anything but, ALS for that. Someone else may have though. I pray for you now as I type this. I hope I've helped . LOTS OF LOVE :-D Jan franks, Tifton Ga. Southern girl too.... G.R.I.T.S. lol Oh and you and your mom need to keep a camera handy also ALS clinic can help with info. I go to Atlanta.

janf,
Thank you for your kind words and support, just knowing there are people who care makes everyday a little easier to deal with. Glad to see another southern girl here. Thank you again for your kind words and prayers. You are also in mine.

ELLISA

John1- Thanks for the info. So what temp. would it be if it were freezing up there. Has bee awhile since I had to convert Celsius to Fahrenheit, plus math has never been one of my favorite subjects.Water freezes at 0°C. I was in Louisiana in 2003 and really enjoyed the novelty of the warm weather and seeing roses blooming in March at the National Rose Garden in Shreveport.

I'm not saying anything against anyone else, don't get me wrong, but there is just something special about, A SOUTHERN BELLE.

For the benefit of you northerners and Canadians, we in the south have always had a attitude about our souther heritage, especially as it goes back to the time when the southern woman was considered a woman with exceptional good manners, dressed modestly, and made their men think they were in charge. When we all knew better, haha.

I still picture the flowing gowns, the magnolias in bloom, the smell of the rose garden, and the wonderful honey suckle.

So when you say you are a Southern Lady, that's what I picture in my mind. Aah let me dream anyhow. Please don't tell me your riding a hog motorcycle with a t-shirt on, smoking a dobie..

God Bless
Capt AL
A Southern Gentleman

OK guys. Canada 101. We use Celsius for temp. O'C is 32'F which the US uses. 15'C is 59'F and 30'C is 86'F. I watched the NFL games on Sunday but missed the Ohio/Michigan game Sat because of the party. Our Gray Cup Game which is the Canadian Football League equivalent of your Super Bowl was Sunday. British Columbia Lions beat the Montreal Allouettes and the game was in Winnipeg Manitoba in an outdoor stadium and the temp was about-6 which is about 24'F. We quit playing earlier because half of the teams don't have domed stadiums and the snow and cold make playing no fun. But then we still get 2 months more of NFL and there is Hockey for those that are fans of that. We get all the US shows up here as well. So if anybody needs to know more let us know. It's all part of the service. Oh and by the way. We do Thanksgiving on a Monday in Oct. so we don't get turkey or a holiday this week. But we can still watch football. AL.

Sad to say AL I did not know any of that. Thanks for the information. They ought to name an encyclopedia after you. You are a wealth of knowledge. I hope you have a wonderful day.

God Bless
Capt.AL

Hey John1- I just noticed that you are in Newfoundland. I was born on the New Brunswick border in northern Maine so I, too understand about cold. But our winters here in southern New England nave been mild of late. Global warming, ya think?

Grampa Al- I'll have an extra slice of pumpkin pie for you on our Thanksgiving. It will be tough to cram it in but somebody has to do it! Plus if I feel up to it I may make my famous (sort of) chocolate cheesecake. I will have TWO slices of that-one for each of us since I recall you also like chocolate, does memory serve me right?

MT-will your Turkey dinner have any regional specialities from the deep south?

Ellisa -

How 'bout you - what are you guys doing for Thanksgiving?

Liz

Hi,
Just let me say you guys and gals are a riot. When I woke up this morning I was feeling a bit down in the dumps, but after reading all of y'all hilarious post I have to say THANK YOU for the laughs.

Al-I have to agree you are a wealth of information. So now that the Canadian League Football is over, What NFL team are you rooting for. Naturally I am for the N.O. Saints (now they will probably not win the Super Bowl but will most certainly go to the playoffs and win their division)and Indianapolis's Colts, Payton Manning (from New Orleans) is unstoppable. Now as for as College Football GO TIGERS (LSU)!
Bless you for trying to explain Celsius and Fahrenheit to me, but still a little over my head.

Mt.- I am most certainly a Southern Belle I still dress modestly (as I was raised the less skin showing the more people will respect you and the more sexy gentlemen will find you) and as for manners Yes Sir and Mam, No Sir and Mam along with please and thank you are still practiced in my home. So no need to worry there are still Southern Belles out there and as for me teaching my 5 year old daughter the same Old Southern Values that I was taught (how to be a LADY).

CindyM-Thanksgiving Dinner would not be the same if we did not have Eggplant and shrimp casserole, meliton with shrimp, smothered okra and shrimp and my moms famous smothered pork roast stuffed with garlic.

John1-I am glad you enjoyed your time here in La. We usually have pretty warm winters on average But do not like to have extremely cold winters because as we say down here really cold winters make for a really bad Hurricane season.

Thanks again for turning my frown upside down
Ellisa

Thanksgiving dinner would never be the same if my wife did not make her wonderful Giblet gravy. All the children ask for it each year.

Sometimes we splurge and do the brine soaked turkey, it keeps the moister in the old bird, and of course the oyster stuffing, cranberry sauce, pumpkin pies, pecan pies.

Geez I'm getting hungry.

God Bless
Capt. AL

Nobody mentioned sweet potato pie. We used to get that and I loved it when we visited Lee's nephew when he lived in Lexington Kentucky. We made it down there a couple of times for Thanksgiving. You guys sure know how to throw a party. I told Lee I want turkey on Thursday too. We'll see. AL.


Oh and by the way I'm a Bills fan. They aren't doing that great but darn near beat Indy so there is hope for next year.

Liz,
we will be spending the day at my moms house enjoying the fact that we ar able to have my brother home this holiday season. You see he just returned in Oct. from Iraq after serving a 1 1/2 year tour of duty.

Al-Sweet potato pie yuck!! Now how about my famous blueberry cheese cake or pecan pie now we are talking. Oh I almost forgot we will be having gumbo also. Why not have turkey on Thursday, The whole turkey thing on Thanksgiving is a little bit over rated (LOL).

God Bless
Ellisa

In my house, the most coveted Thanksgiving treat is that canned cranberry sauce. I think it is gross but the kids and husband actually fight over it if they think we're running out. I make sure we have a can for each of them just in case.

Liz

Hi,:confused:
I have a few questions about muscle atrophy. Everything site on the internet basically give you the same information and no visual pictures.

1. What exactly does atrophy look like?
2. How and where can and does it occur?
3. When it affects the limbs (hand, fingers, foot, toes) is
there any visual changes?
4. Does stiffness accompany atrophy?
5. Do you have to have muscle twitching in order for atrophy to happen?
6. Does weakness occur with atrophy?
7. Does numbness and tingling happen with atrophy?
8. Do your muscles start to feel like"marshmallow" especially in areas
where there is more muscle mass (abdomen)?

For the last 5 months I have not been able to open my fingers and hand fully which is gradually getting worse. Now my Lt. hand and fingers are beginning to do the same thing. I am finding it more difficult to type, grasp items with my Rt. hand and finding it increasingly awkward to do simple everyday task like brushing my hair and teeth as well as holding a fork or pen. I have also notice bilateral indention's where my tibia and fibular bones (shin) are. Any information would be appreciated.

Thank you in advance,
Ellisa

Hi Ellisa.
Those are very good questions. As someone who is new to all this I am waiting to see how the others answer, as well! I can tell you that I get stiff if I don't stretch three or 4 times a day, and I am weak most of the time, worse if I try to do anything physical. The day I pried open a window and pulled the storm window down I was too weak to lift a cup of coffee for the next 2 days! My calves feel like marshmallow and leave an indent when I poke them. In my right hand, there are holes where muscle once lived.

Let's see what some of the otners have to say. Anybody?

Ellisa -

My most advanced atrophy is in my right hand. The first thing I noticed was weakness and then gradually also stiffness. All the while my fine motor coordination got worse and worse. I never even thought of atrophy until I got to my first neuro appointment and he showed me differences between my hands. Basically, all the "meat" or muscle on the top and bottom of my right hand and fingers was gone. My fingers are gnarled - I can't straighten them out or hold them together. For me, the twitching didn't start until almost a year after all of this began.

Liz

Hi Ellisa. I'll try to get time to take some pictures of my finely atrophied hands later today and post them. 1. It ain't pretty. Where there was muscle there is now hollows. 2. If you have a muscle it can and will eventually atrophy, if you live long enough. 3 The visual changes in my hands showed up as hollows on the top side between the thumb and forefinger. 4. Yes in my case in my calves it has. 5. I don't think so. 6. Yes. As the muscle dies off you have less muscle to do the work so you feel weak. 7. Sometimes. I got numbness but only for a short time in the beginning. 8. Actually it is not your muscles feeling like marshmallow it is the fat showing up that you didn't know you had because the muscle is now going away. The fingers curling happens when the tendons shrink because the muscles aren't strong enough to hold them straight anymore. Braces can be made to hold them straight at night which keeps them straight longer. Your OT or PT can get you set up for that. I'm using an electric toothbrush as it is easier to hold. Utensil holders that velcro around your palm make it easier to hold fork and spoon. Hope this helps. AL.

Hi Ellisa. I posted a link for some pictures of my hands and the brace I wear. It's under this General heading titled Hand Atrophy Pictures. Click on the link and it will take you to the pic site.

Gee Al. Thanks for telling us that that spongy stuff is fat, now that the muscles are going away. Now THAT'S gross! (LOL)

Al,

Words can not tell you how grateful I am for you showing me real pictures (especially yours) of what exactly hand atrophy looks like. Reading or people trying to describe what it actually looks like is so incredibly hard to picture in your mind. But actually seeing first hand what you read and hear about actually puts it all in prospective. Thanks again for modeling those beautiful hands of yours. I would also like to thank you for answering my other questions which I could not find answers to anywhere but here. Thank you millions Al for your time, knowledge and most of all your generosity that you are willing to give to others and myself about this life altering disease.,


You are a true blessing
Ellisa

I hope everyone had a safe and enjoyable Thanksgiving and Al I hope you enjoyed your roast beef. My family and I had a nice and quiet day spent at my moms home making complete PIGS of ourselves on her eggplant and shrimp dressing, stuffed crawfish bread and her famous smothered pork roast (my favorite) which I literally choked to death on at the dinner table. My husband had to due the Heimlich on me Everyone at the table just stood there in oblivion. I love that man of mine. So with that note I would like see if someone could answer a question (another) of mine. I have stopped trying to find answers or reasons why things happen in books and the Internet because they all seem to say the same thing or never in terminology that I can deicer. The answers to the questions about atrophy that Al so kindly explained and showed to me , I have to say was the first time in 5 months that I actually could understand and relate to. Thank you again Al for showing and Putting those answers in laymen terms.
Now after all that said here is my question:
1. When chewing and swallowing start to become a problem, what seems
to be the most difficult liquid or solid food? The reason I ask is because for years I have always had problems trying to eat certain foods. But recently I am finding it extremely difficult to eat meats (chicken, pork, turkey etc...) and foods like rice or bread. I do not have any problems with drinking but do find myself using a straw to drink beverages (wine, vodka, coke etc...).

2. Is heartburn a symptom of ALS?

3. Are Some days better than others as far as weakness, strength and
and exhaustion?
Some days I feel not great but like the symptoms of gone away or subsided so I think I am Super Woman like I can clean my house, mow the lawn or go back to work (which I miss terrible) but if I do a simple task like vacuuming and dusting I find myself paying the consequences a couple of hours later or the following day I have to struggle to get out of bed or barley have enough energy to get of the couch for two to three days.

4. Does ALS affect a persons posture (hunched over neck /shoulders)?
I cannot stand or sit with a straight back and my neck and shoulders or always slumped over. I seem to be getting the posture of a 85 year old woman. Try everything to stand or sit straight but I just CAN'T.

5. I Know ALS can affect a person breathing but will it cause you to have difficulty when speaking or reading by having to pause
take a deep breath and continue?
In the last couple of days I have found when reading something out loud that I become short winded and have to pause to catch my breath to continue. Now when speaking or talking to someone I do not find myself becoming short winded but do seem to find that I am speaking slower.

Sorry I am so long winded with every post but I feel if I do not explain what I am feeling or my thoughts in such great detail It is a habit I have had since childhood. So If you all feel that I am being or becoming to chatty feel free to let me know and I will TRY to tone it down.

God Bless
Ellisa

Hi Ellisa,
I hope everyone had a great Thanksgiving. Sorry to hear about the choking .
I think the reason you may be having to take a breath more often when talking, is reduced lung capacity. I noticed the same thing myself. Which is hard for me because I talk a lot and if I pause to take a breath one of my children will usually jump into the middle of my sentence. ha ha
You were also discussing atrophy. My main area is my legs and arms. I had one of my granddaughters ask me to make a muscle over the holidays, and when I did she said Gramps my muscle is bigger than that. You don't have a muscle. I've also lost about 8 inches in circumference on my calf muscles.
Is heartburn a symptom of ALS? I don't know but I have it bad at times. I also have spasms of the esophagus.
I'm not sure about your other questions.

God Bless
Capt. AL

Mt.Pockets,
I am glad to hear that you and your family had a nice Thanksgiving.
Thank you for taking the time to answer a few of my questions. I also have been getting heartburn quite often lately and was just wondering if it is a possible side affect of ALS or just this wonderful Louisiana food causing it HA HA. I am not sure if I am experiencing atrophy or not but have noticed certain things like my rings, watch, and shoes of all things not fitting me the way they use to. My husband has also commented that my skin (muscles) feel like marshmallow almost has if I have lost all of my muscle tone. Now this could be a result of me not being physically active for close to 6 months and just basically being a couch potato. Thanks again for your response it truly helps me try and figure out pieces to this continuous puzzle of mind.

God Bless
Ellisa

Hi Ellisa. I'll give you my take on your questions. 1. I don't really have swallowing issues but toast seems to stick in my throat. 2. If you are taking Rilutek you'll probably get some heartburn. Not sure if it is a usual symptom without Rilutek. 3. Oh yea you will have weak days and days when you think Hey I feel pretty good I think I'll do more today and then you'll have a bad day. 4. Yes ALS can affect posture. As the muscles in the neck and upper back atrophy it gets harder to hold your head straight and walk upright. 5. The pausing in mid sentence was one of the signs the Pulmonologist saw that convinced him I was having breathing issues. Next was sitting forward with my hands on my knees. He said it is a classic example of someone trying to get more air in. About being long winded. Do you have to pause in mid sentence? Lol. Just pulling a bit of Friday humor there. Hope this helps. AL.

Thanks again Al
You are truly a wealth of helpful information and a great access to this forum. I now know that any questions are concerns I have about this retched disease I can post them here and no matter what the answers will be you and so many others tell it like it is, there is no beating around the bush here. To answer your question yes I do have to pause in mid sentence but I just think that is because I run my mouth so much I actually forget or run out of things to say LOL. The sitting forward with hands on the knees have not really have not noticed myself doing that until you brought it to my attention. When I see the Doc. on Dec. 5th I will ask if she can recommend a qualified Pulmonologist, to have a pulmonary function test taken to determine my lung capacity. I use to preform lung test on divers for the doctor I use to work, he specialized in Dive medicine. So I know that a PFT is more of a struggle than painful especially if lung capacity is not where it should be. Hey Al, maybe I should change the name of my thread to "Twenty Questions" since I am a endless book of questions. Thank you and bless you and everyone who are replying to my sometimes (all the time) endless questions:


God Bless Ellisa

We're all in this together. We do what we can to help and advise others on the same road to God knows where. I'm glad you're not too shy to ask questions. It gives me something to do with my days and nights. LOL. Looking up answers of things that I'm not personally aware of is quite interesting. Ask away. AL.

Hi Ellisa. You ask some good questions, usually ones that are on my mind as well! Morrie Schwartz wrote a book about living with ALS. He is the "Morrie" of "Tuesdays with Morrie" fame. His book is not so much about the symptoms but in one chapter he talked about getting heartburn while eating. That makes sense to me. I always had a stomach made of cast iron! Nothing, no matter how spicy or unusual, gave me heartburn. But now I get heartburn if I am over tired, or eat the same size portions as I used to, or just out of the blue, it seems. I suspect it will get worse when they put me on meds but for now I am glad I am still able to chew and swallow.

Al,
Believe me I am not shy, even when I was a child I was always wanting and having to know answers to questions. My mom would say and still telling me to this day " I never meet a stranger". Now I hear myself telling my daughter Maggie those same exact words that my mother said to me. It is amazing to watch her growing up everyday she becomes more and more like her mother. Speaking of my daughter Maggie wanting to the know answers to thousands of question a wanting to see it with her own two eyes she has been asking her dad and I about the sun rising all the who, what why, and where questions so last night she asked the two of us if she could stay up all night so she could see for herself the sun rising in the morning. Well we naturally told her sure not thinking a 5 year old could last staying up all night to see a sun rise. Well guess what she did. I woke up around 4:30 A.M. and there was Maggie bright eyed and bushy tailed waiting for the sun to wake up. At around 6:00A.. Maggie finally got to see her first sun rise. To see her face light up with joy when the sun finally began to show its face was priceless. It was one of the special moments between a mother and a daughter. We created a wonderful memory together. But as soon as she saw what she stayed up all not to see it took all but two seconds for her to fall fast5 asleep.


Cindy,
I also use to be able to eat anything with no problem, but now all I have to do is drink a glass of water or simply just get out of bed in the morning (that is when I am able to sleep) and I have heartburn or indigestion. For the past couple of months of been suffering with it almost everyday all day. I find myself taking OTC zantac at least three to four times a day some days.


Thank you both for the reply

God Bless
Elisa

i also hunch over especially neck. i am having a tough time keeping seated straight in my wheelchair. i'm glad the wheelchair reclinces to eleviate the hunching over.

HI all,

I'm a newbie and not diagnosed, but do work with neurological disorders and swallowing. In answer to you question Liz about swallowing:

Depending on what muscles are being affected will determine what foods you're having difficulty with during intake. Are the solids hard to chew, get stuck in your throat or further down? Does following it with liquids usually help?

You may find that moister foods slide down more easily once muscles start to weaken and you may need to finely chop some items. Sticky foods, will tend to do just that, stick, if your pharyngeal (the muscles in your throat) and esophageal muscles are losing strength and not pushing things down as well (the peristaltic waves to push foods down may be weakening).

Liquids will become a problem with time as will saliva....it's the nature of the beast of ALS, in which all the muscles beccome weaker and you don't have the airway protection, thus you aspirate (any liquids, solids or foreign material going into the airway). Sometimes the innervation is lost for the proctection of cough as well, therefore a person can silently aspirate and liquids can go into the lungs w/o any symtpoms until one gets an aspiration pneumonia. Also, with the weakening of the respiratory muscles, it makes it more difficulty to clear out the aspirate.

Reflux can occur as the lower and upper esophageal sphincters of the esophagus loosen and weaken. Reflux though can occur in many people, it just may happen earlier with ALS or other neurological disorders.

If you continue to have swallowing problems, you need to ask the doctor for a videofluoroscopics swallowing examination done by a speech pathologist, so they can tell what is causing your swallowing problem and advise you on the safest way to eat as well as what textures/consistencies. S/He may also want you to have an esophagram which looks at the esophageal phase of the swallow. Manometry can also be perfomed if they think you have weakness in the peristalsis to measure the strength of your muscles.

The video swallow (VFSS also called a modified barium swallow or MBS) is painless and non-invasive. You will be given various foods and liquids mixed with barium so that it shows on xray, and it's real time and videotaped so we can see everything that happens. An esophagram or barium swallow is the same, only they look at the actual esophagus (tube to the stomach) and give you much more barium. This will give them an idea if you are refluxing and what else may be going on in your esophagus.

For now, if you are having reflux, here are things you can do:

Try to eat smaller meals frequently throughout the day....like six smaller intstead of the usual 3 meals we're taught.

Don't bend over at the waist for an hour after meals.

Don't eat for 2-3 hours before going to bed.

Don't lie down for at least an hour after eating. Sleep with a foam wedge on your bed to keep you elevated. Extra pillows don't help as they bend you at the wrong place and can cause more reflux. You can also elevate the bed at an angle by using blocks to place the head of the bed portion of the bed up about six inches.

Don't wear tight or restrictive clothing around your waist.

Dietary changes:

Try to limit or avoid spicy foods, acidic foods like citrus and vinegars and tomato sauces, fatty foods.

Avoid carbonated beverages, caffienated beverages, chocolate and peppermint, and alcohol.

Avoid smoking.

If you chew gum, that's always good to do after meals or if you feel like you're having heartburn...as long as it's not peppermint! It causes you to swallow more and produce more saliva, both of which will cause more movement in your esophagus and also the saliva can help to neutralize the stomach acid and the enzyme pepcin from your stomach.

In short, a quick lesson on dsyphagia (swallowing disorders).

I hope this helps. Please ask for a swallowing evaluation!

God Bless,

Linda

Thanks Linda for the comprehensive lesson on swallowing disorders. Heartburn is a small thing when there is so much else that can, and most likely will, go wrong but I am one of those folks that like to know the WHY of the thing! Cindy

Cindy,

As well as heartburn being uncomfortable to say the least and annoying, it can lead to other problems too, so shouldn't be taken lightly. There are drugs you can be on to help decrease the amount and protect your esophagus, etc, in addition to following the reflux precautions I mentioned earlier.

Linda