New? Introduce Yourself - Say Hello

[MtPockets]

Please consider us part of your extended family and open up and vent if you need to. I know it helps to have people to talk to and this is the best place for supportive and caring people I have found.
Hey we get angry, mad, upset, pitch a fit, have a pity party, etc. You name it we have been there probably. So feel free to open up and share, we all understand, believe me. :)

God Bless
Capt AL

[SisterG]

My brother was recently diagnosed with a rapidly advancing case of ALS and I can't get past the anger. Even had to go to a counselor to help deal with it because I'm so difficult to get along with - I snap at people and generally feel sad most of the time.
She suggested an on-line support group and I think it's a great thing. I live in a very small town which would not have this resource.
My brother lived such a healthy, clean life and he's such a great person, that I struggle with the injustice of his having to deal with this diagnosis.
Anyway, thanks for listening -- SisterG

[CindyM]

Hello Sister G. Welcome to the forum. I am sorry to hear about your brother. Does he have a wife and children? You all will need a lot of support over the next few months, so feel free to come here anytime. We will be with you at every step of the way. Cindy

[Al]

Welcome SisterG. Sorry about your brother. You can ask questions here , vent your feelings or whatever you need to do. We've all ( most of us) been where you are. Take things one day at a time.
AL.

[Icanmanz]

Hi SisterG! Welcome to the forum. So sorry to hear about your brother. Als certainly is a bad, bad disease, and oh so difficult to cope with. It turns your world upside down. The worst roller coaster ride EVER!!!! Al and Cindy said it all, thanks to them. They do such a good job. I see where Cindy already asked you about his age and marital status. Your mom and dad still around? Any other siblings? May God bless you all, and give you guys the strength. Prayers, prayers, and lots of prayers will help you guys through this dreadful journey. Been there, done that, dear. Wll definitely keep you guys in my prayers. May God bless each one of you, and oh yes, please keep us posted!

Irma

[jimercat]

Hi SisterG! Sorry to hear your brother has ALS. You will find lots of information here along with support. Welcome.

[nbjess]

Hello- My brother he had symptons since winter of 2003 and was told it was a slow degeneration of nerves but just last week the doctor finally told him that he has ALS. He and wife suspected this for quite some time so it was not a surprise. My very good friend Leah Whipple passed away February 9th with ALS. She was an inspiration to anyone who knew or met her. She was so brave and was thankful for each day she had to be here with us all. I want to read the forums and learn as much as I can about this dreaded disease.

[Al]

Welcome nbiess. Sorry for your brother and your friend. There is a search feature up top you can use or just ask away.
AL.

[jdale949]

Hi everyone!
This is only my second day on this site. I love it already and am glad to be a member. What a great way to connect with people of similar circumstances.:mrgreen:
jdale

[Edith]

Hello everyone,

I just found this forum today. My mother has ALS and I think it is the most horrid thing that can happen to a human being.

[rick/Wpg]

Hi Folks....have been browsing the forum since mid Dec...wow! Alternatively laugh, cry and everything in between....it has been very helpful! I've never participated in a forum so if I do something wrong, irritating or stupid please let me know :-D
anyhow....need some help...will give a quick overview and if someone can let me know that this goes thru I'll follow up with a couple questions......
Am turning 55 tomorrow...175 lbs and 5'11 don't smoke but like my beer more than I shud....good health till lately...no family hereditay probs....all4 grandparents lived to 90's and both parents going strong late 70's
In hindsight have been having probs for a couple years...got way more pronounced thru the last 10 months tho....my wife finally convinced me to see a doctor in mid Dec. as symptoms got wayyyy worse thru the fall....he examined me and said i needed to see a neuro asap....did blood work and all is good there.(guess the good news is I can eat bacon and drink beer at least) Had the MRI on Sat. nite and will have results in a day or two...find myself hoping for a small easily removed tumor....how weird is that!

I saw on a thread here that it is wise to contact the ALS society in your province...IS IT EVER! The lady I spoke to was great...we discussed the symptoms and progression and she said ' you have cause to be gravely, gravely concerned' When she found out who the neuro was she said NO...ask to be sent to a different one who specialises in als...gave me his name and is calling his office to try and expedite an appt...she said the first one would only refer me to him anyhow based on the symptoms....and it was going to take 4 months to see the first one...then months more for the right guy..!!! Waiting for a call from her now to see how long it will be...calling her has saved me months!!!!!
Anyhow...if someone can respond and let me know this got thru I'd appreciate it
Tks!
Rick/Wpg

[Al]

Welcome Rick. Sorry for the reason you're here.
AL.

[rick/Wpg]

Thanks Al...yea...wish we could all be doing something else for sure!!!!...read the article in the Globe...well done!
Anyhow...here is what is happening re symptoms...would appreciate any comments....in hindsite see now that I had fatigue and loss of endurance for well over a year or more now but 1st real sign was the twitching in a small band of muscle in my leg that my wife noticed last spring...the fasciculations have spread progressively...all along the inside of one thigh, then to the other thigh....then arms and shoulders....then back, sides and chest...noticed first one on my hand between thumb and first finger just before Christmas.....been having bad leg cramps at nite for over a year in both legs

also started to have a funny ' heavy' feeling in my feet and legs while walking last summer.. ... only way to describe it is that you have to kind of 'think first' to make my legs work...muscle weakness followed and last fall found I could not stand up from a deep knee bend without using my arms to help me get up...now can still get up a flight of stairs but it is hard and if I carry more than 20 lbs I can't get up a stair...weakness also starting in arms now but not as bad as legs

Noticed breathing under exertion started last fall....now even at rest I find I am aware of breath shortness...not bad but definately there...
My GP did that Babinsky test (knew what it was thanks to the forum) and it is positive on my right foot....
also...no vision problems of any kind, no bladder or bowel probs either sooooo altho I know ALS is mimicked by many other diseases I am darn worried when you put all of this together....anxiously waiting to see the neuro
Would appreciate frank comments
Tks!
Rick/Wpg

[MtPockets]

Welcome to all the new comers. I'm sorry you had to seek us out, but please know that we are here for you, to help in any way that we can.

Rick, your symptoms sounds a lot like the way mine started out. I had the symptoms for probably a year and a half before they got bad enough for me to go to the Doctor and start seeking an answer.

I was Dx May 11, 2006 with Lower Motor Neuron Disease/ALS. I have now lost all use of my legs and spend the day in a motorized wheelchair. I have to use a Bi-pap machine to help me breath at night due to loss of lung function. The disease is currently moving into my upper body and I am losing the use of my hands and arms.

A few of the tests for you to consider requesting are:
Nerve Conduction Study:
Electromyography (EMG):
Lung Function Test:

More information about these and other tests can be found on the thread at:
http://www.alsforums.com/forum/showthread.php?p=35239#post35239
Called: Tests to consider for possible ALS/MND And Information About Them


I hope this helps everyone find a starting place to get you moving in the right direction.

God Bless
Capt. AL

[rick/Wpg]

Hey Capt. Al - thanks for the info...am following it up
I feel a lot like a deer in the headlights... you don't know which way to jump or if you should just stand still :-D Will ask for more info when I get the test results....am following some of the threads to find info on progression....am so sorry to hear where you are at!
I know everyone is different but can you tell me when you first needed a chair?
This is so darn hard.....we live in a two story house- lots of stairs - ....have our own small business....have so many decisions that we may have to make way faster than we want and it is tricky. Don't want to run ahead but don't want to be in denial either.
Anyhow....thanks again...really appreciate it

Blessings!
Rick

[angeleyes]

I would like to say hello to everyone

[Icanmanz]

Hi angeleyes! I love your screen name!

Irma

[Katie Mae]

Hi, I've never done this before, but Hello to everyone. Hope to stay in touch for help and info about PLS. Looking forward to hearing from someone. Thanks!!

[Al]

hi Katie. Welcome. We have a few PLS members up on that forum. Feel free to jump in.
AL

[dbw]

I have been reading the forum for the past 5 months. Just noticed that this say hello thread today. My father has ALS (dx 7/2007). I just want to say hello to everyone. It is very informative and helpful here. Thank you all for sharing and supporting each other.

DB

[Al]

Hi DB. Hope we can be of some help.
AL.

[dbenzick]

This is my first post. Hello, everyone.

My husband was diagnosed with ALS in July, 07. In addition to the muscle at:confused:to explain on email, but he says he feels like his diaphragm is weak and he has to "pull" in hard to get his breath...not like their is fluid or anything in his lungs. Has anyone else experienced this?

[MtPockets]

Welcome to the forum everyone. Glad you found us, but sorry for the reason you had to look for us to begin with. I hope you feel right at home. Jump right in with any questions you may have or share what is on your heart today. We are good listeners.

God Bless
Capt AL

[jimercat]

dbenzick,

You need to get to the doctor ASAP. Your husband may need a Bipap machine to help him breath. It sounds as if the muscles in his diaphragm are weakening.

By the welcome and sorry you have to be here.

[Al]

Hi debenzick. Sorry about your husband. I agree with CJ, you should call your husband's Pulmonologist and if he doesn't have one yet call the Neuro and get him checked. He sounds like I did a few years ago before I got my Bipap.
AL.

[sherrie lynn]

HI I am Sherrie Lynn and I am new to this site. I have a sister in law and very good
friend with ALS. I was diagnosed 6 years ago with Multiple Sclerosis. I know that
I was very lucky that I didnot have ALS, but I have seen what it can do.I am going
to be volunteering at the Cleveland Clinic to greet ALS patients when they come
for their monthly checkups. I would appreciate anyone's feedback on some of the
things that I can say or do that wil help people when they come.Please tell me
how you would like to be treated and what would be helpful if you were to
come to the clinic for your follow ups.

Sincerely and God bless
Sherrie

[Al]

Hi Sherrie. Welcome to the forum and thank you for taking the time to help out at the clinic. I'd try to get as much knowledge as you can about the MDA and ALSA. I don't know about that clinic but a lot of them don't have anyone to tell newly diagnosed patients what services are available. This can be important if they need some equipment right away. I'm sure you'll know what to say when the time comes. Just be yourself and be sincere.
AL.

[MtPockets]

Hi Sherrie, welcome to the forum. If your clinic does not have any handouts on ALS, what to expect, etc. You might want to contact these people and explain your job and ask if they have some pamphlets, handouts sort of a starter kit, so to speak on ALS. You might want to try
http://www.alsa.org/resources/manuals.cfm?CFID=5573138&CFTOKEN=cbe9e6-56442833-f827-4c62-9114-0b13551a9441
or maybe this link for more information:
http://www.als-mda.org/publications/

I hope this helps.

Thanks so much for helping.

God Bless
Capt AL

[sherrie lynn]

Hi Sherrie. Welcome to the forum and thank you for taking the time to help out at the clinic. I'd try to get as much knowledge as you can about the MDA and ALSA. I don't know about that clinic but a lot of them don't have anyone to tell newly diagnosed patients what services are available. This can be important if they need some equipment right away. I'm sure you'll know what to say when the time comes. Just be yourself and be sincere.
AL.

Thank you AL for your reply. I can't give back to the people what ALS has taken
from them-but I can give them my respect and compassion for what they are
going thru. I like to volunteer-because when you volunteer it's straight from
the heart.

[sherrie lynn]

Thank you for your reply. I hope that I can provide emotional support. I know
how hard it was when my sister-in-law was diagnosed. She was so afraid.
That was when I joined the Cleveland,Ohio chapter of the ALS association.
I wanted to find out as much as I could so that I could help her.

[sherrie lynn]

I am new to this site also. I have a sister-in-law and good friend with ALS. I have MS.
Just wanted to say my blessings are with you.

Sincerely
sherrie lynn

[sisgldnhr]

Hi,

I came across your website while reading about ALS. I have a feeling that this group will be able to answer some of my questions about my husbands illness.
We are just starting to feel the financial squeeze of him not working (he's been off since the beginning of December), and now wishing that we would have been better prepared financially for whats ahead.
He has nerve & muscle biopsies this coming Monday morning. We've been to 3 nuerologists and they've all come to the same conclusion but there has not been a comfirmed diagnosis as yet. The surgeon also told us that only 50% of the biopsies will confirm a diagnosis.
Its been a very confusing journey thats for sure.

sisgldnhr

[Al]

Welcome but sorry for the reason you're here. Ask any questions you want and please let us know how the biopsies go.
AL.

[Kara]

Hello. I've finally registered here. I may not post often, as I have a 3-year-old child demanding my attention most of the time. :-D I was diagnosed w/ bulbar onset ALS in June 2005.

[Al]

Welcome Kara. Jump in whenever you have time.
AL.

[dadsgrl4life]

Hey guys Im new but my mom has been on this site for a month now and has found strength in talking with some of you! So Im hoping that I can find that same strength in dealing with my dad having this ALS.

Heather

[Rae Ellis]

Hi...I just found this site last night. In 1997, when my husband was finally diagnosed with PMA (LMD), I went online and found very little on the disease and no forums. One doctor told me to "get off the internet or you'll drive yourself crazy." This was after I asked him a few questions I had. So, I was thrilled to see this site and hope I will learn to use it correctly.

My husband can still stand but uses a wheelchair all the time. We try to remain very positive and take one day at a time. He is starting to experience some eye pain and headaches and he is losing his voice. The ALS Clinic says that is due to acid reflux and should get better, but it is not...it's worse. Has anyone experienced this. He supposedly does not have ALS...yet and maybe won't.

[Al]

Hi Rae and welcome. Hopefully we'll all be able to help each other.
AL.

[MtPockets]

Welcome to the forum. I hope you will feel at home here and share your questions and concerns.

God Bless
Capt AL

[Claude]

Thank you for taking the time to visit us at ALSforums.com.

Please take a moment to sign up an account and post a message here saying hello.

We hope all of our members find the answers they need; if you can't find what you're looking for, don't be shy, post your question and someone should be able to help you :)
Hi Folks
I'm new to this and I'm not sure if this is the proper way yo get started but here goes..

My wonderful mother-in-law has been syffering with BulBar ALS and the last two years we have been watching her health decline. She has reached a stage where she can no longer swallow anything and although she has a feeding tube she continues to lose weight.
She has symptoms we can't seem to find much info on including; her left eye has completely swallow shut, she has a progressive infection in a finger on her left hand and today she is complaining about her left ear aching. Are these symptoms related to the disease?
Is this normal?

[hearts_and_thoughts]

Just want to thank whoever is responsible for making this site. It is a great place. Thank you and God Bless!!

Mary Jo (CALS)

[Al]

Hi Claude. Sorry about your MIL. Those infections don't sound normal. I think she needs to see a doctor.
AL.

[MtPockets]

Welcome to the Forum all new people. Please consider these threads below in my reply.
Thank You
I wish the best for all those here and peace for your journey.

For those who might want to look at a Thread dealing with spiritual topics please do a search for the title on the threads with the search link above,
Encouragement for Hurting Christians

and also the new thread called

CHRISTIANS HERE TO HELP YOU AND TALK

I do not wish to offend anyone and their beliefs. Each of us has to face this walk with our own way of handling things. If you have questions of a spiritual nature and would like to discuss them with a Christian, please feel free to ask them on the above thread where other Christians may answer you as well as me, or e-mail me at grandpamarble@cableone.net

My Teacher told me, "Above all things, to be at peace with all men, if possible." This is all I try to do in my own awkward way.

For the benefit of the newbies on the forum. I am a grandfather to 17 grandkids and have 4 children. I am currently 61 years old, and I have a lifetime of experiences, varied like you would not believe, including being Dx with ALS May 11, 2006.

I am currently confined to a wheelchair and I am in the process of losing my ability to use my hands and upper body movement.

If you are sick, I've been there.
If you are rich, I've been there.
If you are poor, I've been there.
If you feel hopeless, I've been there.
If you are mad, I've been there.
If you are sad, I've been there.
If you feel you are facing this all alone, I've been there.
I've been up, down, in, out, crazy, sane, you name it I and I can claim it.

So you see I can identify with most of you and what you are going through.
Now if none of this fits you or your loved ones, happy living and goodbye. :confused:

God Bless,
Capt AL

[gpcal76]

Hi everybody :)
My name is G and I am a nursing student in Fremont, CA. I have chosen to focus on ALS and so pleased to have found your site. I will be a RN in June (hopefully!) and my current project is based on how ALS affects a person's (and their loved ones' and friends) lives. Thank you for allowing me to have a better understanding of how it affects everyone diagnosed and involved and what issues are most pressing currently. I am inspired by you all and your posts.
Looking forward to posting with you :)

[mwool]

I am new here, my husband has been dx with ALS and i am looking for any information, support, friends!!!:???:

[Al]

Hi gpcal76 and mwool. Welcome. This is a pretty good spot to get both information ans support. There is a search section at the top of each page. Type in what you are looking for. Most topics have been covered or just ask.
AL.

[Raymond]

Hello! I am a new member who has to decide quite soon if a PEG will be installed. I do not have difficulty swallowing or eating but have lost breath strength and the concern is that I may not be up to the procedure at a future date. Do any of the members have an opinion, advice or stories of PEG problems?

[abbas child]

I, too, am new here. I was diagnosed in November, with symptoms starting in one leg three years ago. Thank you for being here! In looking around, there seems to be a lot of support and information.

Ann

[MtPockets]

Hello all new members and welcome to the forum. I'm glad you found the forum and sorry for the reason you had to look us up.
For Raymond seeking more info on the Peg Tube you might want to check out this page http://www.oralcancerfoundation.org/dental/tube_feeding.htm
Also there has been some discussion on a thread you can find by using the search icon above and put in "To tube, or not to tube (feeding tube pros and cons)"
Leave the quotes out. I hope this helps.

[joejoe75]

Hi everyone my name is Joelle I am new and my mother was recently diagnosed with ALS. She is in a facility was living with me but her disease progressed so quickly we had to place her somewhere she actually loves it there and is safe and getting great care. I am just having such a hard time dealing day to day, I see her everyday and everyday seems worse. I just got married in her hospital room 2 weeks ago so she could be there for the ceremony she was so happy she power chaired me down the ailse it was great. She has frontal temperail dementia as well. She can talk, eat be in a power chair but she can't feed herself, walk, and her speech is slurring. I just need to know there's others out thier and hear from other people that are out there. Looking forward to hearing from everyone. Thanks for listening. Joelle

[Al]

Hi Joelle. Welcome but sorry you have to be here. You are not alone. There are many here in similar situations. Use the search feature at the top of the page or just ask away in the relevant section.
AL.

[joejoe75]

I am 32 years old, my name is Joelle and my mom just got diagnosed with ALS in May. She is in a nursing facility, which is great everyone and she loves it there. We had here home but the disease accelerated so quickly it became unsafe for us to care for her at home. I'm just lonely and angry, probably like thousands of you. She can't feed herself, walk, dress herself either. But she can be put in a power chair and has bad slurred speech but can talk and is very aware and herself. Along with the ALS came a form of dementia called FTLD is anyone else dealing with that? It's not memory related it's behavioral she's very child like. I just love her so much I see her everyday this just sucks. Nice introduction so uplifting sorry, just wanted to know there are people out there thanks. Joelle

[joejoe75]

Didn't mean to repeat myself I did't see my post so I re did one thanks. Joelle

[jimercat]

Welcome Joelle! Very sweet that you got married at your mother's facility! Hope you will find support here as you come to need it.

[msmissy]

Hello. I explored a few messages on the site and looked like something i could benefit from! I've been caring for my dad for the past 2 1/2 years with minimal help. Getting pretty burned out. I still have my whole life ahead of me. Hoping to read more on how to tell when enough is enough. Or maybe something positive that will inspire me to continue this way. Looking forward to talking to people who can relate!!

[Knobles]

My sister was diagnosed March'07 with ALS she is 40years- it started with her speech slurring. She wnt orangic(holistic) she did not want to be a guinea pig -it is exactly 1year from her dx- within 5 months of her dx shewas bed ridden- she cannot eat,talk,walk she cannot do anything. My question is how could her symptons come on so fast. She had to be hospitalized last night due to dehydration and malnutrition. She cannot swallow(she chokes on a sip of water and her food is being put thru a blender) she refuses to use the breathing machine or even consider a feeding tube She won't use the hospital bed in her home. I try to help my brother-in-law as best I can I usually watch the boys for him on the weekend or come over and stay with her a couple hours so he can rest(unfortunately she does not want him out of her sight)--He does not sleep-I don't know how he functions. I took care of her for 24hrs with no sleep and I am so still trying to regroup-She had to constantly be moved and she needed to use the bathroom every 15 mins. She becomes so fustrated when trying to communicate. He does this everyday with 3hours sleep total for the week. He is about to lose his job. He can get a home attendant for only 3 hours a day no more tthat is what his insurance will allow.

[MtPockets]

Welcome to the forum. I know you will find the people here very helpful, caring, and thoughtful. This place has been a blessing of encouragement and understanding of this horrible disease for me.

Knobles, it sounds like your sister has the form of the disease called Bulbar. If you want to hear more about it, do a search using the icon above and just type in bulbar. You will find many on here who have experience with this form of the disease.

Bulbar progresses very quickly. There are many different ways that ALS manifests itself. Each of us is different, but yet alike in so many ways.

God Bless all those who have come to find this site and are experiencing this terrible fight. All of the members are here to help you in any way that we can. Just another member.

[DeeMichelle]

Hi
I've been reading posts on this forum for a while it's really helpful.
We have familial MND in our family. 3 of my Dad's brothers and sisters died from MND/ALS. I'm looking for anything helpful.

My Dad may have ALS/MND and is having tests in a specialist neurological centre in Birmingham, England.

Dad has a lot of difficulty with speech. He may have had a mild stroke 2 years ago, which had a small effect on speech. Over the past year his speech has deteriorated to a point where it is very hard to understand unless you know him and both he and us have to try really hard.

Swallowing is becoming more difficult and Dad has lost a lot of use in his tongue. Dad's facial muscles have also atrophied a lot.

My Mum has developed an amazing nutritious and tasty menu for him that is easy to swallow.

Other things: Well Dad is, I'm very proud to say quite active and strives to do things and be independent. Dad has no problems with his limbs. Dad walks, shops, gardens and even had a go at football with my son this weekend. Dad is very brave about the speech problems and still goes shopping on his own and just writes things down if they do not understand him.

Dad has also had a lot of chest discomfort for about 10 years, which doctors have really failed to give a diagnosis to. Maybe this is something separate to ALS does anyone else get chest discomfort?

Dad does not have tremors in his limbs although he is slower than he used to be.

Does this sound like MND given his limbs are not obviously affected? I know the speech, swallowing and tongue problems do seem like MND.

Please any advice would be much appreciated.

Wishing everyone on this forum love and support.
Dee

[Steve100]

Hi Dee, and welcome to the forum.

Whats on that menu? Sounds delicious :)

Best wishes

Steve

[fiddleplayer51]

Hello,
My husband is in the process of being diagnosed with ALS. In December 2007 he began noticing his voice sounded different although I didn't notice anything unusual. Then by January his voice had a distinct nasal quality. He went to our PCP who first started him on Clarinex in case his symptoms were allergy related. Then he tried Nasacort and finally the antibiotic Cefdinir thinking that it might be a sinus infection. Nothing helped and a CT of the sinuses was negative. The PCP was convinced that we must be dealing with allergies. We requested a second opinion with an ENT doctor.
My husband also began noticing that he was drooling at night onto his pillow.
His liver enzymes, AST and ALT, have been elevated for a year and so, in addition to referring him to an ENT, our PCP sent him to a gastroenterologist who noticed fasciculations of his tongue. A couple of days later at the ENT appointment an examination with a laryngoscope revealed rhythmic fasciculations of the larynx on the left side. That's when ALS was first mentioned. The ENT referred us to a neurologist who also did a thorough exam and mentioned possible ALS.
In addition to bulbar symptoms of difficult speech and drooling, my husband exhibits hyperreflexivity in his limbs, right side weaker than left, ripples in his back and upper arms, but a negative Babinski. He gets cramps in his legs and feels stiff if he sits too long.
He had an MRI of the brain and cervical spine yesterday morning, and Friday he goes for EMG and NCV studies. If the neurologist concludes after the tests that it's ALS, he insists on our getting a second opinion. We're fortunate that there's an ALS center 55 miles from us in Charlottesville VA.
This evening while eating supper, he choked badly. He's choked a couple of times prior to this, but this was the worst episode yet.
We also found out today that an ultrasound done on his liver last Friday shows pancreatic cysts. He is therefore scheduled for a CT of the abdomen next Wednesday.
This is all so frightening and sudden. He is 65 and has been so apparently healthy until December.
Luckily, I'm an RN and worked for 14 years as a staff nurse at our local hospital. I've had patients with MS, but never with ALS.
Thank you all for being open about your symptoms, problems, etc. I'm sorry for what everyone is going through. Living one day at a time is certainly key to surviving.
All the best.
Jane

P.S. I also posted this in the "Welcome New Members - Say Hello" Forum

[CindyM]

Hi Jane. GLad you decided to join us! I am sorry to learn about you DH, though. It is a challenge but you sound like you have the necessary attitude to cope. Write anytime and let us know how things are going! Cindy

[MtPockets]

Dee,
I think the best advice I could give you is to be sure you go to a Doctor who specializes in treating ALS patients. I do not know if you have an ALS clinic where you are, but this is the most important thing to do, I believe. Any other Neurologist probably can made the Diagnosis for you, but I would much rather have someone who deals with the disease every day and has more experience.
Since you have the history of familial MND in your family, it would be easy for a Doctor to jump to the conclusion that is what He has without exploring any other options. Indeed, it may turn out to be ALS. I hope and pray that is not the case.

[Maryteeth]

Hello,
I am new to this site. Thank you for having this available. My mom was diagnosed last year with ALS. But, looking back now she had it for 2 years prior, but was misdiagnosed as a stroke. She has the bulbar type and at this present time she can not communicate verbally but she can at least write. :) Lately, she has been getting muscle spasms in her torso and sides when she moves sideways or bends down. I was wondering if anyone out there knows what this means? Is this a bad sign? :cry: Help. Thanks

[fiddleplayer51]

Thanks CindyM and everyone. Sounds like we're all in this together. My husband is now having numbness in his face around his mouth and twitches in his back and face. He also is having cramping in his feet and legs when he does his exercises (he has been doing yoga for 30+ years). Occasionally, he loses his balance when he is walking. His speech is getting worse.
Friday he goes for EMG and NCV tests. Waiting for the final diagnosis is so hard.
Thank you all for being here. I can tell this is a non-critical and non-judgemental group. Each of us has our own set of circumstances to deal with, and yet we have a common bond.
All the best to each and every one of you.
Jane

[MtPockets]

The symptoms you are describing do not sound good. However it is best to have a Doctor who treats ALS every day make the Dx. For more information about ALS clinics in your area go to the link below.
It is hard to help you if you have not had the necessary tests done to narrow done what may be going on. It took me over 2 years of testing before they had ruled out everything else and said Yes I had ALS. It's difficult to Dx to say the least.

Some information about ALS Clinics in Florida:
Mayo Clinic Jacksonville
Suncoast ALS Clinic in St. Petersburg, FL.
Follow this link for more information:
http://www.alsa.org/community/default.cfm?CFID=6012460&CFTOKEN=534ef3a-4a0c83ea-63d5-4911-b989-b6bb5c168cca

It is best to go to a ALS clinic that specializes in treating ALS for a detailed diagnosis. Under the ALS association there is no charge for this service. For more information about that go to: http://www.alsa.org/

I hope this will help you get pointed in the right direction. My opinion is just that, my opinion. I am not a Doctor, but the symptoms do not sound good to me.

[albert07]

I'm new here and still finding my way around. Haven't posted much, but appreciate all of the information available. I live in Colorado and was diagnosed in December. I'm 45 and am blessed with a supportive wife and two kids- 5 and 7. The last three months have been a roller coaster but things are starting to level off a bit, thank goodness. I'm pretty low on the learning curve with all of this, but thanks to this forum and some of the others I'm getting up to speed.

[hopingforcure]

Hi, glad things are getting a little steadier in your mind. One thing everyone agrees with about MND is it sure does not give a little nudge, everything about it will knock you for a loop. As time goes by though, the human mind has a way of processing things and making them liveable. I read many years ago that the human mind cannot remember pain, and that I believe, we would all be a mess if that were true. We can remember joy much better, and that is a good thing. As time goes by the pain of this disease, is erased by joyful times and memory making...

[kirya2@hotmail.com]

Just dropped in to say Hello. My brother was diagnosed in the fall of 2006, and there are times I am sure his spirit is stronger than any of ours. A dear friend lost her Mom to ALS just yesterday and I am a little raw around the heart today. I really like this site and found it did lift my spirit somewhat. Thanks so very Much!!!!!!

[Al]

Hi kirya2. Sorry about your friend's mom and your brother. We usually recommend that you don't use your email address as a sign in name. Less chance of getting spam. You should be able to go into user cp up top and change it. If you have problems let me know.
AL.

[kimberly ann]

Hi I Am New To This My Husband Was Diagnosed In Dec. 2007 Wow Am I Scared I Am A Nurse And His Primary Caregiver. I Have No Idea What To Feel.i Am Really Angtry And Fel Like I Am Cemented In Quicksand Help!!!!!!!!!!!!!!!!!!!!!!!

[Al]

Hi Kimberly Ann. Most of us have felt exactly as you do. Read some of the posts from Caregivers. It may help. You'll learn to live each day to the fullest and take them 1 at a time.
AL.

[jimercat]

Hey KimberlyAnn!

Sorry you have to be here, but welcome. The quicksand feeling lasts for a while, then you find you have no choice but to move forward or surrender to defeat. This forum will help you move forward.

[fiddleplayer51]

Welcome kimberly ann. You'll soon be stepping out of the quicksand as your nurse instincts kick in. I too am a nurse and the primary caregiver of my newly-diagnosed husband with ALS. Working on the floor with your patients day to day year after year, you can hardly imagine the struggles that some of the patients and their families are/will be dealing with upon discharge from the hospital. And then BAM! Here it is right in your face. It's your own husband! It's incomprehensible, but I bet it will make us better nurses in the future as we help patients and families through their illnesses.
My prayers are with you. Take care. One day at a time. Read a bit on this forum every day and post when you feel like it. It's so inspiring. There are so many good people struggling daily and yet still able to offer encouragement to others.
All the best,
Jane

[mlbugge]

I posted this earlier today and got no responses. I'm not very computer savvy and I think I posted this in the wrong place. I guess I'll try again. Here goes...

In October 2006 (just 18 months ago!) my husband was putting an addition on the garage to our recently purchased home. In early January 2007 he took a fall at work (caused by ALS?) and injured his knee enough to require a full knee replacement. That is where our nightmare began. Due to workman's compensation complications, etc., he did not get his surgery until July 2, 2007. His orthopedic surgeon explained that the typical recovery would allow him to return to work in about three months. He went through the customary therapy but not only was he not improving, but he was becoming less and less mobile. His weakness moved from his legs to both arms. We were then referred to a neurologist. I will spare you the details of the countless tests they ran (not uncommon from what I've been reading on this site). But it was not until December that we went to Rush Medical Center in Chciago where he was finally diagnosed. They referred us to UIC (Univ of Ill Chicago) Medical Center where we are now part of their ALS Clinic. Words cannot explain how thankful we are for the medical attention he has received from both Chicago facilities. My husband is now confined to a motor wheelchair, as he can no longer walk at all. He also has very little ability to work with his hands. He can no longer feed himself, etc. His speech is slow and kind of slurry. I am very afraid of how fast his condition has deteriorated. He is still able to eat anything, although he has had a couple choking episodes - very scary! I would like to know what to expect next. I guess there's really no way to know, but if anybody's disease progression has been similar to this, please help me with some insight. I discovered this site a couple days and have been reading non-stop. It took me a couple days to decide that I could be a participant as well as a reader. It was all of your candid comments that gave me the courage and I thank you all.
ML

[trying to stay positive]

Hi ML, and welcome to the forum. Sorry for the reason you are here, but this is a great place for support, hints, venting, etc.. My husband was diagnosed 8/07, and we too, go to the ALS clinic at UIC. What Dr. do you see? We see Dr. Kincaid. Have you met Nicole? She is the social worker there and she has been very kind and helpful. If you click on my blue username to the left of this post, you can view all of my other posts. My family's story is in one of the first few. ALS is a tough road, but the people on this forum are here to help you with the journey. Wishing you the best.

Linda