New? Introduce Yourself - Say Hello

Welcome Robert and thanks for the bio. Sorry about the reason you're here but jump in whenever you feel like it. AL.

New member Introduction

Hello....My name is Janice, and I live in San Diego, Calif. I first learned about A.L.S. 5 or 6 years ago when a friend came down with this horrible disease. I became one of his many caregivers, when his mom got a Share the Care team together. I found the experience to be very rewarding, and it touched a place in my heart that I still carry with me today. It wasn't long before I found myself doing volunteer work for the local ALS Chapter, and I now work for the association full time as a driver. I drive patients to and from their doctor appointments, and deliver much needed equipment to their homes. My friend has since passed on so I have his picture hanging from my rear view mirror, as a reminder (not that I need one) of why I do what I do.

I want to thank you for this support group, and I look forward to sharing my experiences and learning more about what I can do to help, or just get my frustrations off my chest.

Janice

Thank you Janice for joining and sharing your knowledge with us. The world needs more caring individuals like yourself that will take the time to help others. Welcome. AL.

Janice-

I think it is wonderful how you are helping others with ALS. I'm positive your assistance is making a huge difference for folks. Glad you've joined us.

Liz

I think I originally posted this in the wrong thread so I moved it here. I hope this is the right place to post. heres my story:

Hi, I have been " lurking " for a couple of weeks now but I feel the time is right for me to introduce myself. I am a 43 year old female who lost her mother and her brother to als.My mother passed away in 1968 after als for a year, my brother passed away in 1989. My mother was 29, my brother was 30. About 2 months ago I thought I had restless leg syndrome, it lasted a couple of weeks and then I moved on to other symptoms. I would walk up a set of stairs and my legs would be tired. So thats about where I am today my legs constantly feel like I have pulled mucsles. Its not the same muscle, its different parts of my leg, both legs are affected. Today I spent walking the mall shopping and then took a mile walk when I got home, while trying to cook dinner my one leg seem to be shaking. It wasn't noticable, just the sensation of being shakey. I have not been to a doctor yet. I thought I should get life insurance before going to see a doctor. The insurance goes through next week so I will go to the doctor after that. I have read the post about first symptoms, I am not sure mine match? I am not sure I know what the definition of atrophy is. Does it sould like I have atrophy ? I know with my mom it started in her arms, with my brother it started in his legs. I guess I could call my ex sister inlaw but at this time without having anything concrete the less people know the better I think it is. My sister has already started me on a bunch of vitamins, the same ones that I read about everyone being on. Could they make those things any bigger ? Has anyone had first symptoms like this? Sorry so long. You are all such an inspiration Thanks Mo

Welcome

Hi Mo -

Welcome to the forum.

I think your idea to update your life insurance before getting a documented diagnosis is brilliant. Do it! I kind of got blind-sided with my diagnosed and upgrading my life insurance is obviously no longer an option but really wish I had better coverage - one of those things I put off just a little too long.

There's a thread about atrophy including pics which you can find if you browse.

Nice to meet you.

Liz

Hi Liz, I live about 30 minutes from albany. What a small world. Thanks for the respond to my post. You and your family are in my prayers. Are you going to the st peters als center? Glad to meet you as well Mo

Hi Mo-

No kidding, small world.

Yes, I started at St. Peter's ALS Clinic at the end of November with Dr.Cooper. They just recently moved to a new location off of Fuller Rd. near 87N. If you want, send me a private message with your location and we can see just how close we are.

Liz

Hi I'm New

Hi Everyone, I'm Lynn, and I'm new. My mother (79) was just diagnosed with progressive bulbar palsy in November 2006 by the Mayo Clinic (AZ). She started having symptoms 8 years ago, so this is progressing very slowly with her, and I'm glad. She started out with her speech slurring and getting slower and her tripping over words with more than one syllable, and then her speech got progressively worse, harder for her to speak, and harder for us to understand. Now she can barely speak, it just comes out garbled, and she writes things down. Then she started having trouble chewing, and that got progressively worse. Now she eats soft foods only, like eggs, tuna, and oatmeal, and lots of Ensure Plus. She can barely move her tongue at all. She has lost around 40 lbs. She is also having problems with drooling. At this point, she does not have fasciculations or significant limb weakness, and she is not on a feeding tube, as she can still swallow okay. But she is walking slower and her handwriting has changed, and she's finding it harder to hold a pen properly. So it might be bulbar ALS. She is depressed and overwhelmed, and I'm trying to be as supportive as possible. I've done a lot of research on ALS, and it is overwhelming and I'm very moved. My heart goes out to everyone whose lives are touched by this. I found an ALS support group in my area (Los Angeles, CA), and we have gone once, and we look forward to going again. This forum looks like a very nice, supportive, informative place, and I'm glad I found you.

Best course of action

Hello and thank you for being a valuable source of information out there on the world wide web. So far this is the most comprehensive information I've found on people affected by ALS (both patients AND caregivers).

I was talking on the phone with my aunt last week when something I said alarmed her to the point of actually getting kind of crabby with me. I've never heard her lose her cool or get noticably upset during my entire life.

Almost two years ago I went in for an MRI after telling my primary care physician that I had fainted twice in the same day. A few days later I got a disturbing call from my PCP with the preliminary results of my MRI which said abnormalities were consistent with MS and I should be tested further.

I've suffered from migraines for almost 20 years now (although remarkably better on vitamin therapy for the last two years), so I called my neurologist to follow up. I went through a battery of tests including nervous system functioning, a spinal tap (lumbar puncture) and evoked potential testing. I received the results about a week later in his office, "you don't have MS."

I went on about my merry way although I did wonder why my MRI had changed from years earlier. Could my nearly two decades of dibilitating migraines have caused the abnormality on the MRI? I put the thought behind me.

As I was talking to my aunt, she asked about my prior testing for MS (she has a lifelong friend with the disease) and asked if I had any continuing symptoms. I told her that occasionally I have muscle weakness and attributed it to fatigue from sometimes always spreading myself too thin.

I went on telling her that I was really feeling my age lately (I turned 40 in May) because I felt like I was losing the strength in my hands and frequently dropping things. I told her, "I'm always in a rush, doing too much and I'm just clumsy." Occasionally while sitting at my desk at work, on the sofa at home or in bed at night, I have muscle twitches (mostly in my upper body) in areas that I haven't worked out on. I told her now that I'm older that I just can't keep up and no matter how much I work out I just don't seem to gain much strength and that my leg muscles have lost any shape they once had in my 20s. Also, turning older has made me more, rather than less, emotional in certain situations. I have no breathing or speech difficulty other than my usual habit of speaking too fast and stumbling over my words occasionally. Sometimes I feel like my brain is working at twice the speed of my body.

Normally I wouldn't put much weight in someone overreacting, but my aunt was an administrator for a county run hospital in the states for decades. She is not a doctor, but over many years has seen her share of conditions, symptoms and tradgedy in her career. She was noticeably alarmed and asked that I make an appointment to see my neuro again. She demanded that I ask him about testing for ALS.

I'm seeking any information on whether my symptoms are even consistent with ALS, can symptoms of MS potentially be simiarl to ALS. If my symptoms are possibly consistent with ALS, what questions should I be asking of my neuro when I go for an office visit? Are there specific tests I should request? Is it possible to have early symptoms, test negative and later be diagnosed with ALS? Is there a reliable test for early diagnosis? Is there anyone out there who has had ALS for a number of years since diagnosis without progression of the disease?

I checked out information on the Internet after talking with my aunt and quite frankly it is a little disconcerting I just turned 40 this year and I live 2,000 miles away from my immediate and extended family, although I have a strong network of friends near me. Professionally I work as a financial consultant and I'm used to being able to research a topic to find the answers. The prognosis and speed of ALS from the time of diagnosis is alarming. Any information, guidance, advice is greatly appreciated.

Thanks much and Happy Holidays!

Hi GNW. Welcome to the forum. We've had people here that have been told they have MS and then later be told it was ALS. There is no one test for ALS. They rule everything else out and then say you have probable ALS. When you get real bad then they can say with certainty that you have it. Some people take 10 years to progress but 2-5 is more likely. AN EMG test and a NCV test as well as Lyme's disease would be a good place to start with tests. Most have an MRI done as well as a spinal tap. And then you wait. Usually to see if more symptoms show up. There are people here with no firm diagnosis after a few years. Don't expect any quick answer because with ALS every patient is different. Similar but different. Good Luck. AL.

Welcome to the forum GNW and Lynn.

I hope you can find answers to some of your questions here and know also we have all walked down the path you are now taking. You are not alone. I know that's not much comfort, but know that we care and will try our best to make you feel welcome here and assist you in any way possible. Please feel free to share anything that is on your mind, we understand sometimes it helps just to have someone to talk things over with.

Merry Christmas and Happy New Year. And may God grant you peace as you seek answers.

God Bless
Capt. AL

First time/day on forum

Hello everyone! It's my first time/day/reply on the forum. Read some posting from the past - a lot of information. Thanks to the originators. I'm slow right now, but I'll be a regular visitor.

I'm not really "grumpy". Just an old coach that was pretty demanding. Softened over the years. Ended up being more like the "Staypuff Marshmellow Man" :-D than a "Grumpy Coach".

Nichole in Mt. Holly, NC - Sister ALS

In May my sister started having weakness in her arms and falling a lot. Now she can't walk unless someone is supporting her, she can't get-up without someone supporting her. They did a CT scan, MRI, MRA, plain x-rays, and numerous blood-tests - all those tests were negative, they then did a nerve conduction study that revealed problems with her motor neurons. Her neurologist did not say what could cause the motor neuron problems but the doctor said she was referring my sister to another neurologist who specializes in motor neuron disorders. While the doctor was out of the office I looked up this information in my home medical dictionary and had a list of motor neuron disorders. When the doctor returned I asked her if there was anything else it might be besides those and if the doctor could eliminate any of them. The doctor said that she did believe it was one of those and she eliminated all except for ALS and PLS. I don't think it is PLS since she has gone from no symptoms to unable to walk unassisted in eight months. She is also having fasciculations in her arms and legs the ones in the arms really do look like a bag of worms under the skin. In December my sister fell trying to go to the bathroom and she broke her right arm and had to have surgery to remove three bone fragments and put a metal plate in her arm. This week her doctor said that she should go ahead and apply for disability (she hasn't worked since July but she has been drawing unemployment because she lost her job); and she needs to start using a wheelchair. Before the doctor said any of this stuff my sister said that she did not ever want to need a wheelchair because they are so uncomfortable. We have a manual wheelchair that one of my loved ones used many years ago that we have given her to use right now but she has refused to use it at all. My sister and her husband and our mom refuse to believe that she has something that is going to get worse instead of better; they don't want to talk about or plan for what might happen. My sister lives in a small house and her husband has stage 4 melanoma that he has been fighting for the last 14 months. She also has a 13 year old child. I would like to sell my house and have a house built that her family can live with us but my husband while he is happy to take their child does not want to sell our house or let the whole family live with us. I am upset with my husband over this. My dad says that their family is not ready to consider that they may need to do something else. I am so sad I have cried almost constantly since the doctor told us all this on Wednesday. I need emotional support and I have questions.
1) Am I wrong to think that she does have ALS when the doctor has not said that is what it is? The doctor did refer her to the ALS Center in Winston Salem.
2) Which is better the ALS Center in Winston Salem or the ALS Clinic in Charlotte?
3) When she applies for Social Security Disability doesn't she need to be able say what she has and if they have only said a motor neuron disorder, unable to write, stand, or walk is that enough; I read that if she has a diagnosis of ALS it is faster and easier to get the disability. Her unemployment runs out in a little over a week so she needs something soon.
4) If they own their house but it is too small and inaccessible for a wheelchair are their options where their family can stay together because I know that she is going to want to be with her child and her child will want to be with her. (I am sorry for being so generic with my sister, her child, etc. but I don't want to violate her privacy if she is not ready to share the details of her health.) Note: Right now they will not let anyone into their house because they say it is too messy and cluttered for them to let anyone in. They like their privacy. Her husband does not like for anyone to ask him about his cancer he just says that if he needs help he will ask for it and if he doesn't ask then don't ask him. (I don't want to make it sound like they are not friendly before his cancer they were the most fun to be around and we wanted them to raise our daughter if anything happened to us.)
5) Given the information above what advice do you have for me?

I am very sorry this is such a long post. Thank you in advance for any support.

Regards,

Nichole

Hi Nichole. Welcome to the forum and I am sorry for your problems. The ALSA has an office in Raleigh phone # 919-755-9001 or 877-568-4347. They might be able to answer some of your questions about aid for your sister. I think we have some members from N.C. but it might take a few days for them to see your post and give specific information about your state. In the meantime you can look on this link for S.S information. AL.
http://55jer.com/randysalsmanual.htm#COPING_WITH_ALS
The information you need is about half way down.