New? Introduce Yourself - Say Hello

[Becky]

Thank you for this web site! I have so much to learn about MND/ALS. My fiance was just DX. I think this will help us both. Thank you again.

[Becky]

:? I am trying to post questions but can't for some reason.

[Al]

You should be able to. On the right side of the page in the last post there is a papet and pen. Click on that, put your message in the box and submit. Instructions also at top of this section under sticky's.
AL.

[georgie]

Hi. I'm from Sydney, Australia and would like to show my support for this wonderful site. Today my friend was diagnosed with MSD. The many voices here palliate what has been a shocking truth.
At least he is not alone.

[fiddleplayer51]

georgie,
I'm so sorry about your friend and hope you both can find help and comfort here on the forums.
Welcome to you and to all newcomers. Post whenever and whatever you need to. You're truly among friends here who are sharing this road with you.
Jane

[ladyk]

I'm Karen, 46 and in the grueling process of diagnosis. I started being ill just about one year ago. I twitch, have pain, weakness on the left side, I drop lots of stuff, stumble and occasionally fall for no apparant reason (can't even feel it coming!). I found this site one day whilst I was freaking out about my illness and reading everything I could find on the internet about neuro disorders. I want to thank you for helping me gain some composure on the days when it all seems just too much to endure. I laugh and cry at the posts and figured it was time I pony up and at least say "hi".

[cariad]

Hi,
my name is Berni and I care for my mam who has FTD/MND. She's only recently been diagnosed with the mnd although we've expected it for a while.
My mam has difficulty speaking, chokes now and again and finds breathing difficult when lying down. I've been trying to view photos on this forum but it keeps telling me I can't. Can any one enlighten me?, thanks Berni:)

[Al]

Welcome ladyk and Berni. Sorry you had to come looking for us but glad you found us. Some features of the site are not available until you post a certain amount of posts because we had a lot of problems with people joining and posting porn sites. Feel free to ask questions or just talk and vent your feelings. This is hard to deal with and we understand.
AL.

[Mand406]

I just wanted to take the time to apologize for the negative posts.I didnt mean to bring anyone down at all,I am just having a hard time with this being that I am 28 with 2 small babies.Please forgive me,and I hope that you guys will give me another chance at talking with you.
Thanks:)

[ekm1979]

Hi I'm new to this site.. how do i post a reply>? Better yet how do check responses to my thread...??? I'm so confused :oops:

[jimercat]

You just posted a reply!:-D

Go back to your thread that you started and check for responses. Just look under what "forum" you started your thread under and locate the title of the thread and click on it.

by the way, you may be interested in posting your threads regarding caregiving under the Caregivers forum.

[ekm1979]

Thanks for the caregiver forum advice. When I click on my user name it says I do not have access to this feature. or when I look at other profiles it restricts me. Why is this?:-?

[Al]

Until you post a few more messages you don't get full meembership. We had to do this to keep out spam and salespeople. Be patient.
AL.

[ekm1979]

Aren't we all so great at patience? :)

[Al]

I would hope so because the wait for a dx. is longer than the wait for full membership. You're getting close.
AL.

[CindyM]

I think we are all good at patience, but some days I am not a patient patient. Just ask my doctor! :-D

[mstexasstyler]

Hi all. I am New to this site and ALS. A friend of mine for 13 years was just told he possibly has ALS. Dr. wants to do EMG test. I was hoping by joining I could learn about ALS and what to do to help him and me deal with it and it's symptoms. Right now his left arm has gotten smaller and he can't control it. He has constant twitching in both arms even in his sleep. What can I do to help? How is the best way to be supportive? :confused:

[MtPockets]

mstexasstyler,
You are making a good start. This is a great place to learn more about ALS and how it effects those of us who have it or have friends who have it.

I would say a good place to begin is to Google ALS and read all you can about how it affects people. You can also use the search feature if you have a specific topic you need more info about or just jump in with any questions.

One other thing I would say is; be there to listen to your friend.
Sometimes it means more to us just to have someone to talk to about issues with this disease. Also encourage your Friend to join the forum.

They may have some issues that we can help them with from time to time.

Thank you for being there for your friend during this difficult time in their lives. We all need friends like you.

[elliekusa]

Hi everyone,

I finally decided to post after "lurking" for several months. I have had "issues" for quite a few years, but several trips to the hospital and two stints in a skilled nursing facility have me a bit concerned. I am not one to jump to conclusions, but all of my doctors are "stumped".

Long story short....you have heard much of this by now....I have many neuro issues that dr's are working on. Twitching, cramping, balance and coordination problems (severe after exercising), mind-numbing fatigue, some atrophy in left arm, spasticity (especially in feet), babinski sign present, weakness etc. I was diagnosed at one point with hemiplegic migraines, but I don't always get a headache...just the hemiplegia.

I had one abnormal emg 8 months ago, but no reinervation (in left arm).
Now I am much weaker having difficulty with everything. I went from cane to a walker to a four wheel walker to a wheelchair (just picked it up today). I need it for longer distances that I can't walk.

MRI and ct are normal. The neuro just ordered a muscle biopsy.

Oh...I am also a gulf war vet (first one). I saw the neuro today and I said, "So, I guess I don't need to worry about the twitching and cramping". His reply... "We are concerned about all of it...that's why we are going to do a full workup". They already did most lab work I've seen posted here except a lumbar puncture and the muscle biopsy. I see him again in 3 weeks and I think they are going to do more emg's on other parts of my body.

My GP is VERY concerned about ALS. I am trying not to get worried at this point, but it is a bit scary. I did a triathlon last October and now I can barely walk. It has helped a great deal to read all the posts and all the other possibilities...so I am just hoping for the best.

Sorry about the long post.

Ellie

[CindyM]

Hi Ellie-I am sorry about how this is all working out for you so far. I know what you mean when the GP says he is worried about ALS. wow can I relate! Anyway I am glad you decided to join us and wish you luck on your next round of tests! Cindy

[MtPockets]

Ellie, Welcome to the forum and let's hope for anything but ALS.

I do not want to add to your concern, but there have been an abnormal amount of Veterans from the Gulf war who developed ALS.

If you have not already checked this, you might want to search the web for some of the articles. I just put in "Gulf war veterans ALS" into Google and got many articles.

Most of those who got ALS developed it right after they returned.

Let us know if we can help with anything at all. Jump right in anytime.

This is just one of the links and a short comment:
https://www.bcm.edu/fromthelab/vol02/is10/03oct_n1.htm
Department of Defense Study, for what it is worth.... "According to the study in the Sept. 23, 2003, issue of the journal Neurology, Gulf War veterans deployed to the Gulf Region have nearly double the risk of developing ALS, also known as Lou Gehrig’s disease."

[elliekusa]

Thanks Al for your reply. I am quite aware of the studies done on ALS in Gulf War Vets. I was in touch with Dr. haley in the 90's when they were trying to get a study going. I had some symptoms then but no progression....now here I am ten years later losing function very rapidly.

I know I was exposed to crap in the gulf, so it would not be surprising if it ends up ALS. I will just hang out for awhile, stay positive and hope for the best. At this point it appears I have both LMN and UMN involvement but all the "official" tests are not completed.

You are all an inspiration!

Ellie

[ZenArcher]

Ellie,

I served '92 - '00 with two tours in the Southwest Asia Theater of Operations but not during the presumptive time frame. I have done quite a bit of research concerning ALS and vets. I am the vice chair of the ALS Association Veterans Issue Team. I recently testified to the House VA Subcommittee on Disability Assistance and Memorial Affairs on H.R. 5454 which will make ALS presumptive for all veterans. I have been working for over a year to become service connected and to date I have not. Because of that I have become fairly familiar with the process.

In a few more posts you will be able to receive and send private messages. If you have any questions or need any assistance on the VA side please feel free to contact me. In the meantime post any questions and we'll do what we can.

[elliekusa]

Jeff,

Thanks for all you do on behalf of all veterans with ALS. Please let me know if there is any way i can help with what you do. If you were in SWA you SHOULD get service connection (even if it wasn't during the so-called presumptive time frame). Lord knows we were exposed to enough crap! :)

I am 10% service connected for an "undiagnosed neurological disorder" and I am also 100% for PTSD. I will need to reopen my case concerning the "undiagnosed neuro stuff" since things are getting much more challenging. They gave me that rating back in the 90's when they could not explain all the neurological problems...they just chalked it up to PTSD.

Let's keep in touch. I would really like to help in any way I can.

Ellie

[ZenArcher]

Careful what you wish for I just might put you to work :-D

[elliekusa]

It would keep my mind off the "waiting"! :)

[ZenArcher]

Well there's one coming in the General section once it gets past the moderators.

[Al]

It's past us moderator types. I'll have to give you my phone # Jeff and you can give me a heads up when you put up a link.
AL.

[BethU]

H, all ... I'm posting here to make the little message "New Member, Say Hi" go away when I sign in! It's taken me a while to figure out how this board works.

Will try to make this short (but doubt if I'll achieve it). I'm 72, live in L.A.. My symptoms started March 16, 2006, when I woke up from open heart surgery. Started with blurred vision and slurred speech. Nurses said the speech issue would go away, as it was probably from several days of entubation, which can damage the vocal cords.

It has not gotten better, nor has sight, both of which continue to deteriorate. Speech is almost unintelligible now, swallowing a big issue, chewing is pretty much out, as I can't move food around in my mouth. Respiratory failure resulted in three-week hospitalization in December with more entubation. Have tongue fasics and atrophy. EMG on 5/5/08 showed denervation in three areas, and the neuro called it ALS for sure.

Now getting some left arm weakness and hand problems. Will be trying to get speech augmentation device ASAP, and probably will need the "cough machine" (whatever it's called) soon. Neuro last week detected gait problems, and weakness in left leg, although I don't feel any problems with my leg yet or weakening. Still driving (cautiously) and getting yet another prescription of eye glasses this week.

I'm hoping that with bulbar onset plus heart disease, I'll croak before the rest of me gets too locked up. :-) The heart disease messes up my nutrition, as I am limited to 32 ounces of liquid a day because of the heart. Have to really stretch the liquid with smoothies and protein powder to get sufficient calories.

I think I haven't wrapped my mind around this ALS thing yet. I still stop and think, "You're really got ALS. Holy cow!" (Although I don't use the word "cow.") ALS still seems sooooooooo unlikely, as I really don't have the strength of character to handle a disease like this! But "one day at a time" seems to work so far.

My husband is 81 and in early Alzheimer's, and doesn't really understand what is happening with me. He's frail and has had chronic pain for about 25 years. Takes heavy pain meds, so he doesn't drive. He also gets lost when he does take the car, even on short trips. I gave him the "caretakers" book that ALS Assoc. gave me, but it upset him too much to read it. He's been falling a lot lately, too ... just collapsing in a parking lot, or while shaving, and nobody can quite figure out why. Doesn't lose consciousness, or get dizzy, just keels over. He requires 24/7 caretaking to dole out his meds, and make sure he's fed, etc. He'll wander away from the table during dinner, and I have to keep bringing him back till he finishes his meal. When he falls, I can't lift him (although I can help him up), and if I fell, he couldn't lift me, because of his back. So we're going to be in a pickle when I'm not able to drive or cook or get around the house any more.

But I'll worry about that later. We have no kids, but do have some nieces and nephews in the area who have been FABULOUS and supportive.

Have been reading this Forum since my 5/5 dx, and I can't believe the hard science information, in addition to the terrific emotional support you offer. Reading your messages is now an important part of my day.

Been listening to Leonard Cohen songs as I paint (I'm an artist), and love the lyrics.
"The birds they sing at the break of day,
" 'Start again,' I heard them say.
"Don't dwell on what has passed away,
"Or what is yet to be..."

Thanks for being here.
Beth

[elliekusa]

Thanks Jeff for the Advocacy Link! I got right on it and will forward it to as many people I know. :)

[fiddleplayer51]

Welcome, Beth. I've seen some of your other posts, but this one here is new to me. I'm glad you filled in some of your story. Looks as if life has thrown you a curve ball. I'm glad you've got those nieces and nephews.
Sounds as if you'd better get busy lining up a care team. You're going to need help and with this disease, you've got to be one step ahead. There's a thread in the "General Discussion About ALS/MND" forum called "Forming a care team". Go to page 13 of that forum and you'll see the "forming a care team" thread about half-way down. There are some excellent tips there on lining up help.
Have you registered with the ALS Association and with MDA (Muscular Dystrophy Association)? The services they offer are invaluable.
You sound like a cheerful person. That's certainly a help. It's great you paint and have songs to listen to that are inspiring.
Take care and do all you can to line up as much help as you can. You're really going to need it. You've got such a heavy load on you with being a PALS and caring for you husband.
All the best and good luck,
Jane

[BethU]

Sounds as if you'd better get busy lining up a care team. You're going to need help and with this disease, you've got to be one step ahead. There's a thread in the "General Discussion About ALS/MND" forum called "Forming a care team". Go to page 13 of that forum and you'll see the "forming a care team" thread about half-way down. There are some excellent tips there on lining up help. Have you registered with the ALS Association and with MDA (Muscular Dystrophy Association)? The services they offer are invaluable. Jane

Jane, Thank you for the terrific advice. I will read those threads and see if I can put together a team.

I have registered with both the ALS Assoc. and MDA. MDA is the one sponsoring my treatment at UCLA. Both groups have been TERRIFICALLY helpful. I also have a "case manager" from my insurance company, who is wonderfully supportive and sympathetic.

The one comfort in all this is that I know that if I go first, my husband will be cared for by his nieces and nephews. Probably not as well as I'm doing :) but he won't be abandoned. Meanwhile, I'm trying to give him a "normal" life for as long as possible ... and me, too!

Thanks again,
Beth

[fiddleplayer51]

Beth,
It sounds as if you've got what it takes to deal with all of this, and I'm so glad you're already benefitting from ALSA/MDA and have a case manager.
I can tell you've got a great sense of humor. Hang onto that for dear life! It will never let you down. :D
Good luck in the days, weeks, months ahead.
Jane

[elliekusa]

I took a few days off due to information overload!
I started doing more "research" and just got a bit overwhelmed. I am anxious to have my muscle biopsy and the VA is sometimes a pain. They were suppose to do it ASAP and now I can't get any answers about when it will actually get done.

Jeff, I would like to help with advocacy, but right now I realize that my emotions are all over the place. If I try to talk to someone about it ....I just start to cry. I am not a cryer! However, once it starts it just comes flowing out.

I have good doctors at the VA and in the civilian world, but it is time to ask for a referral to a an ALS clinic. THAT makes the possibility seem so REAL!

I went swimming this week and swam about 600 meters in a 50 meter pool....just a small portion of what I use to swim in my triathlon days. I felt so good, but started to cramp and then could barely function for the next 3 days! The mind is willing but the body is not! :) I ended up sleeping, eating BAclofen :) (within my prescription guidelines of course) and not doing much of anything.

Today I am going to the beach to get my feet in the water and watch the sun go down with my partner. I realize until I get some kind of definite diagnosis, I must appreciate ALL the simple things in life!

I sent a long email to Dr. haley in Texas (he is the neurologist who has done lots of research on the neuro effects of the Gulf War). I spoke with his secretary on Friday. Hopefully,we will have some insight for my doctors. He is a really nice guy with a BIG heart!

Anyway, sorry for the long post. I just needed to vent! I

[ZenArcher]

I understand completely. Get your situation figured out we'll be here when you're ready :)

I never thought of getting in touch with Dr. Haley, very good idea. Another one you may want to get in touch with is Dr. Marc Weisskopf at Harvard. He has also done quite a bit of research on ALS and military service. Keep us informed.

[brownhornet]

Hello Everyone....I am new to this site. My mother in-law was dianosed 2 weeks ago with ALS. I am trying to be as informed as I can. She starts going to the ALS clinic at Emory next week.

[Al]

Hi brownhornet. Welcome but sorry you had to come here. We have a few members from down Georgia way. Ask any questions you might need answers to and use the search feature too.
AL.

[clewbcg]

Hi everybody. I'm not new on here, but I wanted to start a new thread and I didn't know how. I don't have the post a thread button on my screen, so I thought I would ask on here. My question is: Does anyone else have fasiculations around the eyes? My pal was diagnosed 2 years ago and is just now starting to have severe problems with hand strength and speech. I noticed a few days ago that he was twitching around his eyes. Will this affect his ability to open his eyes?

[BethU]

Hi, clewbcg, yes, I have very noticeable, constant twitching under both eyes. It started under one eye early in 2002 (I remember when someone pointed it out to me), and I thought it was just a tic then, but once the other symptoms started in 2006, it's become constant under both eyes, and very noticeable. So maybe that first twitch was an early warning sign.

Anyway ... it does not interfere with my eyesight at all, or my ability to open and close my eyes. (I do have eyesight problems, but those are separate.) I cannot feel the twitches around my eyes at all, and only notice them when I look in the mirror.

Good luck!
BethU

[clewbcg]

Hi Beth
thank you so much for the reply. you have really eased my mind. it never fails to amaze me how much info is available on this site. our doctor is great, but doesn't always have the answers to specific and/or practical questions. thanks again.

[Al]

If you go back one page clewbcg, there is a " sticky" called Forum How to with pictures that explains how to post and start threads.
AL.

[jimercat]

brownhornet,

Welcome to the forum. The folks at Emory are great. They are very caring and address every concern you may have. Good luck!

[Lissa]

Al,

Thanks for helping. I don't spend alot of time on the forum. I have 3 kids and keep busy. If I think about Mom I go crazy. My kids and I are going to see her in August. PDaddy's wife called me last weekend but did not leave a number. He has a friend who is in my scout pack (just another thing to keep me busy). I will check my info and see how to unlock PM's.

Thanks,

Lissa
MrsWillHike@verizon.net

I check that one more.

[Lissa]

I just emailed Al. I can't find my way around this forum some nights. Your wife tried to call last week, but I was up IceHouse. Have her call me. How are you doing? What tattoo did you get?

Lissa

[Lissa]

I'm trying to get the hang of these forums. I was trying to reply to PDaddy. But I guess I still have some learning to do. LOL
:oops:

[MtPockets]

Lissa, no problem we all had to go through the learning curve. If you want to reply to a message you are reading, at the top of that page of messages, on the left, is a green button that says, Post Reply. Click that and a window opens where you can enter your message. After adding what you want click on the "Submit Reply" button below your message you just typed in and it will come up for all to see.
I hope this helps and welcome to the forum.

[Al]

Lissa. I've sent you a Private Message aboout that feature. You should get a pop up notification next time you sign in.
AL.

[oneof6]

Afternoon everyone,
My name is Steve.
On July 15,2002 we lost my brother Chris to als. Chris was 1 month shy of his 41st birthday. Needless to say, it was a very difficult time for him, his family and friends.
Both of our parents are alive and it was nearly unbearable watching them watch one of their 6 kids die. As difficult as it seemed at that time, we've all pushed on and as Chris wanted we all share in the lives of his children. He had a son now 14 and a daughter now 24. His daughter had a beautiful baby girl about 10 months ago. I can say that I think we've all learned to better live for each and everyday.

Here's the bad part...

We learned Saturday that our youngest brother Timmy most likely has developed als.
Timmy is 41. He has 2 kids 18 & 15. He hasn't not been officially diagnosed. My father is a physician and he is 99.99% certain.

I simply do not know how in the hell we are going to do this all again. I know we will and eventually that terrible day will once again come to my family.

I suppose there are the inevitable questions..
Do I have the bad gene?
Did I pass it along to my son and daughter?
Did they now pass it along to my grandchildren?

This is an absoultely "#@$&^&*-up" disease!!!!!!!!!

[PDaddy]

Al,

Thanks for helping. I don't spend alot of time on the forum. I have 3 kids and keep busy. If I think about Mom I go crazy. My kids and I are going to see her in August. PDaddy's wife called me last weekend but did not leave a number. He has a friend who is in my scout pack (just another thing to keep me busy). I will check my info and see how to unlock PM's.

Thanks,

Lissa

I check that one more.

Hi Lissa,

I just saw this thread and emailed you with our phone number.

pat2

[Lissa]

Thanks Al,

I got it, along with a message from PDaddy. You're awesome.

Lissa

[Lissa]

Capt Al,

Thanks for begin so helpful. Your bio fits. I usally check the forum late at night when my husband and kids are sleeping. So I'm either tired or just the typical stay and home mom who can do homework, cook dinner and fold clothes all at the same time. But a simple (LOL) computer gets the best of me sometimes.

Lissa

[ebeck]

Hi, my husband was diagnosed with ALS at age 35 in May of 2007 while I was 5 months pregnant with our beautiful miracle, Morgan. She is now almost 10 months old and very busy! Anyway, in one year Chris went from his thumb feeling funny to barely being able to walk, his arms are completely atrophied, he no longer has use of his hands, and I can only understand him about half the time. We almost never leave the house because it is too difficult. It is hard for me to find time to spend on the computer, but I need to make contact with people to know we are not going through this alone. I have been on this site a couple of times, but finally tonight feel some courage.
Erin

[oneof6]

Hi Erin
I'm new here but old to als.
Many here I'm sure know where you are.
I'm sure you'll find lots of able listeners.

Take a some time to care for yourself and Morgan as well as your husband.


Steve

[Al]

Hi Erin. Welcome but sorry you had to come looking for us. You have a difficult journey ahead but we will try to help.

AL.

[slm49]

Hello David and all forum members. I just realized that I had not introduced myself. I have already posted one message and has some amazing replies; people have been very warm, caring and helpful. I am still trying to figure out how to send a private message. Can you help me or tell me where to find the info. I looked under FAQs but when I try to get the info it tells me that I am not authorized to be on that page. Since I'm new to this whole forum concept I will keep investigating and learning. I already have printed off several caregiving tips and I plan on starting a binder to keep track of all of the helpful info. THANK YOU!!
sharon

[Mommi2One]

Hi everyone,

I am new to the forums and posted my first message on Friday 7/25. Thanks to everyone who replied with your thoughts and advice. I am a 35 year old female who believes I may be facing ALS. My grandmother was diagnosed at age 47 (after 2 years of the VA telling her it was all in her head) and passed away at age 50. She had Bulbar ALS and her symptoms started with her speech. It's looking like I'm following down the same path she did except I also have non-stop internal tremors.

I'm trying to learn all I can about this disease so my family and I can be prepared for what's to come. I am thankful for each of you and the information/stories you share on this forum. The stories of confusion and frustration have helped me so I know what to expect. I haven't visited the neuro yet, but am prepared that it may be a long road to diagnosis. I pray everyday that this is not ALS, but also can't ignore the possibility it is.

God bless each and every one of you. I look forward to talking and praying with you.
Mommi2One

[MtPockets]

Welcome to all the new members. I know you must have a million questions and the members will try to help you get answers to them as soon as possible. Welcome to the family and I am sorry for the reason you had to join us.

[brendapals]

Ditto Capt. Al,

Welcome to all newcomers! So sorry you had to join us, however, you have come to the right place to ask questions, vent, share, and all the rest.

Welcome to the family!
Keep the faith,
brenda

[AndyB]

I am new to this site since I am experiencing some of the symptoms spoken of here. I have to say I am glad I found you folks. I pray for all of you that are suffering whether you have been diagnosed with something or whether - like me - you are still trying to get answers. We have an all powerful God that loves us and wants us to turn to Him for comfort. I found this site because of Him. God bless all of you.

Andy

[Al]

Hope we can help you on your journey Andy.

AL.

[brendapals]

Hey Andy,

Welcome to the family,you will find a lot of support here.

Keep the faith,
brenda

[donnainwash]

I have been a member since 2006, but on some pages they say I have a problem with registering. I would like to correspond via forum to individuals that are similiar to me. Dx in 9/06, am 74 years old and female. i need help. More private conversations.:-?:-?:???:

[donnainwash]

I am having the same problems. Did you get some answers. I need to know how the private conversations go. My problems are the same as most, but would like to share with someone else.

[Al]

Are you still having problems? You haven't been posting for a long time. I may have to reset your account. Respond here to this message please.

AL.

[Debbie54]

Hi ,I am so glad I found this site.My name ie Debbie and my husbands name is Matt. Hope to get some ? answered and to make some friends to help me through what my husband is going through. Can't wait to get to now you all. Debbie:)

[Al]

Welcome Debbie. Sorry you had to come looking for us but glad you found us. Hope we can help.

AL.

[MtPockets]

Hi debbie welcome to the Forum.
I'm sorry for the reason you have to be here.
I have a sister named Debbie also. Jump right in with any questions, thoughts, etc. We look forward to hearing from you.

[silvermane]

Well it's been 4 months since I received my "death sentence" and so far my symptoms have not progressed one little bit. In fact the symptoms as mentioned in my first post (below) have actually diminished significantly. There is absolutely no weakness in my legs or arms and in fact my arm and shoulder muscles have strengthened considerably as a result of some light weight training each day. I have also been able to almost triple the number of repetitions for each arm.

Although my tongue fasiculations are still there, they also seem to have diminished somewhat, and contrary to what one specialist said about losing the ability to talk and swallow in 3 to 6 months, these have not changed one little bit.

So, apart from some minor fasiculations in my arms and tongue, I have no other symptoms. I have no muscle weakness at all and I feel fine. I am becoming more and more convinced that they have got it all wrong and that I do not have MND at all.

My diagnosis came after a couple of EMG tests as well as the usual consultations with my Neurologist and a second opinion. Have they got it wrong?

Does anyone else have a similar example?

Hi all,

Brand new to this site. Diagnosed with MND last week and I have to say my life has been turned upside down. I am a 52 year old male living in Melbourne, Australia. I am married and have two great sons, 20yrs and 17yrs both living at home.

I have been having arm/hand cramps for a couple of years and following a visit to a neurologist last October, fasciculations were observed in my upper left shoulder. These have now progressed to both arms and my tongue. I have apparent weakness in my left arm and right leg, although my leg doesn't really feel weak. My neuro has said that I may lose the ability to speak and swallow in 3-6 months and this has scared the living daylights out of me.

It may well be far too late, however I am now changing my diet to healthy foods and filtered water and willing to try alternative regimes. Any suggestions welcome.

Anyway that is me at this stage, and I look forward to chatting with members of this forum.

[MtPockets]

WOW... That is great news Silvermane.
I wish we all could say the same about our progression. Of course there are variations in the speed of progression of ALS for each of us. I have limb onset and have been blessed that it is relativity slow. But, it is still moving onward.
Four months and no change? I have gone that length of time in some stages of my disease without change. Then again I have the S L O W version. As much as I hate to say it, I would be concerned with a DX just based on EMG tests. I have had probably 20 tests over all including a muscle biopsy before the Neurologist would give me a Diagnosis of ALS.
Maybe you should think about finding a ALS clinic near you where you can get another opinion from someone who treats this disease every day? Just a thought.

[claudiamedic]

Hi,

I'm Claudia and some of you may know me from PLM or LWALS at Yahoo. I'm a 47 year old single mom, diagnosed with bulbar onset ALS in August 2005. Slurred speech was my first noticeable symptom and it started in October of 2004. I can still walk, talk, eat and drive. I fatigue extremely and have pain in my neck, upper back and shoulders (presumably from compensating for the weakeness and/or decreased ROM in my weaker shoulder). I have used a BiPAP and now AVAPS for nearly 2 years nightly. I still hate it but it is a necessary evil.

I have three children with special needs, with one (age 11) still living at home with me.

I am a former ER nurse and flight paramedic.

I am a Christian and believe that I have been SO blessed IN SPITE of ALS!

I have a website at www.claudiasfamily.com if you want to know more about me.

Blessings,

Claudia

P.S. I have a blog set up here but don't see a way to add a new post! Can anyone help!?

[brendapals]

Welcome Claudia!

You sound like a very, very strong woman! I also was an ER nurse, and am still working as a nurse 4 days a week in a rheumy practice. I just started my last semester of classes to have my BSN in Dec.

I was dx with ALS-bulbar onset- on 6/3/08. So far slurred speech is all I have. I have 3 boys, all active in sports, my hubby just retired from our fire dept, we're flipping a house, and I'm still going to get my BSN!

Once again, welcome, I hope to get to your website tomorrow,
keep the faith,
brenda

[claudiamedic]

Hi Brenda,

Sounds like we have a lot in common. Please feel free to email me at claudiamedic at live dot com.

Hope to hear from you soon!

Claudia

[goblue771]

Hi all,

I have been curious about the validity of my SpinoCerebellar Ataxia (SCA) diagnosis since my neuros decided upon it. Investigating it further led me here. My docs say that I certainly do not have ALS because of the results of the CMG (?) (lots of shocks) they had me undergo twice. I am not so sure. But - Me? Distrust a doctor? (hehehe)

Just today I read about a study that shows that Lithium inhibits the "progression" of ALS. That intrigued me because I took Eskalith for 20+ years for bipolar disease, and when I finally decided not to take that anymore (afraid of the side-effects of long-term usage) is when my SCA/ALS symptoms got WAY worse.

Anyway, these forums look to be interesting. I'm looking forward to reading what other neurologically-troubled people have to say.


Paul

(GOBLUE!!)

[Al]

Hi Paul. Welcome. I hadn't heard of SCA before. Interesting reading. You can search using tab at top of page or on the bottom of some pages there are Similar Threads. You can just ask specific questions if you can't find what you're looking for.

AL.

[shelly2612]

Hi, I am Shelly from rural Southeastern Ohio. My husband and best friend has some issues, I think this website will be very helpful. Good Luck to all those here with me