Not open for further replies.

Lisa Lane

Jul 25, 2006
I started with foot drop in Oct 05. In Jan.06 I was still walking, hiking and swimming. In March 06 I got my DX. In May I was still walking, but with a walker because I started falling a lot. Now I am in a scooter because walking is just to hard. My right arm and hand and getting weaker and my throat feels thick. My first appointment with the ALS clinic is next week. I hope they can give me tips on slowing this down. I was diagnosed so quickly and I am lossing my strength, I think, at an alarming pace. Does it work this way and then slow down? Any thoughts? I have been reading that some of you had symptoms for years before it was even diagnosed.

Yes everyone is different in the rate of progression. I have a friend that has had ALS since 1997. He is still able to eat and even drives himself to work even though he requires a wheel chair when he arrives! my first symptom was about four words that I had trouble saying. Words like tylenol and remember. Not a big problem but I felt like something was going on. I first was diagnosed as having had a mini stroke. But my symptoms progressed to the point I went to see a second doctor last December (05). Within three days he had done all the testing including the emg (very important test for this disease) and narrowed it down to either ALS or it's first cousin called Kennedy Disease. I had to have DNA testing done to eliminate the Kennedy Disease, which I do not have. My problem area is what they call bulbar onset, which effects the throat and mouth area. I can hardly speak now (getting one of those AAC machines soon) and swallowing is challenging too (had a PEG feeding tube put in last week). I also have some foot drop (small drop) in my right foot. Yes I have fallen a very few times, but for the most part I can go just about where ever I want when ever I want. So you see, there is no one out there who can tell you what your life will be like tomorrow. My theory is to live one day at a time and do and enjoy whatever you can. Don't be consumed by what may happen. For it may not happen to you! My doctor has two ALS patients that the symptoms have stopped and not progressed for YEARS! So hang in there girl. I hope you will be able to handle it well. Keep coming back to this forum with any questions you may have. All of us are here to help any and all who need help. Hope you have a great day. Rick
Hi Lisa!

I was diagnosed about a year and a half ago with ALS however my symptoms have not manifested as rapidly as some who have it. I am still able to drive and do many other things but I do understand that it is a daily process. I am not able to walk more than a few hundred feet without a walker. I have about given up on the cane as I tend to loose my balance more often. I use a wheelchair at work because I am unable to negotiate steps or any kind of incline but I am able to manage ok. A friend of mine just gifted me with an electric scooter so I can get around outside because I rarely go out unless its to my car. Now I can go outside for a "stroll" around the neighborhood when I want to.

I recently had an EMG done and it appears my muscle impulse is slowing down somewhat. My throat feels thick as well and swallowing is a challenge without choking so I have had to figure out a careful way to eat and drink. It's a tough way to go but I am facing the challenge head on and so should you. I still have many things to accomplish so I am not about to let this slow me down. In fact, I am going to Disneyland for my vacation at the end of the month with my family.

So my advise to you is to live each day one at a time. I know it sounds cliche-ish but its the only thing that's worked for me. And pray too! God hears our prayers in times like these. Best of luck to you and as Rick mentioned, come back to this forum if you need any help. We're all in this thing together! Aloha! -Pila =-]
Hope for the best but prepare for the worst, just in case. We all wish we could know what, when and how things will happen with ALS. All the facts prove that it can't be predicted. One day, hope proves there will be a cure or at least a way to slow it down. We don't know why for some there are stretches of reprieve.
Pila, welcome to the forum and congratulations about your upcoming trip to Disneyland. Just thought I would mention that the original posting is from 2006 and she hasn't been on since October 2006.
My symptoms started with weakness in my left arm and progressed into my right arm after a year. I was diagnosed 3/10 and the stress of the diagnosed advanced the disease very quickly. I immediately started losing strength in my legs and was shaking alot.

After reading online that ALS can sometimes be mistaken for Lyme, I found a Lyme doctor and started IV ceftriaxone. I felt better within 2 weaks, my legs strong enough to walk a mile again. My arms have still not regained their strength but overall I am much better.

My neck is very painful and I have a hard time holding it up if I look down. I hope I have a cervical pinched nerve but it may be ALS progressing. I'm looking for another neuro who is open-minded about the possibility of Lyme. I can't even function if I think I have ALS, its too devastating.
How often do you get the IV Ceftriaxone? Since it is in a Phase IV trial around the country, maybe it really will work at slowing down ALS. Have you been tested for Lyme disease?
My lyme tests have come back negative over the last 5 years. I've had so many of the classic symptoms that my doctors kept checking me for it but CDC tests are very innaccurate (little did I know!). Lyme and coinfections are smart bugs and mutate into different forms during their life cycle. They are stealth pathogens that mimic healthy cells so your body attacks itself trying to get rid of the infection.

I'm taking 2g of ceftriaxone via an iv once a day. I've been on it for 5 months now and hope my doctor will continue it for at least a year. I think the study has patients on the drug up to 5 years. I'm still hoping I don't have ALS but I guess I'll always live in fear.
Hey NOTALS! I hope you just have Lyme disease and not ALS. I've had a firm diagnosed of ALS for about 2 yrs and still can't believe it. I'm just not the typical patient. I fight it and am a big whinger. But early in the process my neuro posited that there was a blood test result that indicated it might be something wrong with my parathyroid gland. This led to the classic goosechase for about 5 months. It ended with the endocrinologist saying there's nothing wrong with your thyroid. You have ALS. My sister was with me. We went out to dinner later and left in tears before the entree arrived. It was brutal. There's nothing nice about this disease. Hope you don't have it.

Started to have walking problems 8 months ago. In a wheelchair now. Right hand is very stiff now too ans starting to get breathing problems.
My husband was diagnosed with ALS in Feb/March 2008, the symptoms started about mid 2006 we just didn't know what it was. His arms went first, he can't lift them, very limited use of his hands. It is in his legs now, starting with the left as it began in his arms. The leg is weaker but he is still walking, he has to be very concious of picking the foot up to not trip or fall . His breathing is still great. Our doctor told us to begin preparing the house for a wheelchair , probably about 6-9 months out if the leg weakness continues at the same rate. Ideally we would use a cane or walker but he is unable to hold them.
Hello Kangdapp!, just wanted to share that my first symptom was foot drop, and I was stumbling over everything and afraid to go anyhwere without falling. But my PT suggested a foot brace for the foot drop. I have some weaknes in both legs now, but still am able to hike in the forest, my favorite thing to do. Sometimes I carry a hiking cane just for reassurance if I loose my balance.Thnakfully my insurance coevered the AFO brace. Now I can walk almost normal without fear of falling. Just thought this might be useful to you. You might pass this foot brace by your doctor to see if he thinks it useful, but go ahead and try out wheelchairs too. I myself am going to an ALS conference in nov. to check out wheelchairs. I think it is good to try out before you actuall havr to have one, so that you feel some kind of control before its an necessity.
God bless you for the loving care you give to your husband. Those of us who have this disease really admire you!
April a year ago was falling a lot and ly right foot flapped.
Now 18 months later cannot walk, talk, breathing is hard, arms and hands v weak, swallowing a thing to be done with enormous care, certainly cannot drink water. Need 24 hour attention and everything is so difficult - can do v v little for myself. Head a ton weight and neck painful, feet dying constantly of cold, and lately i can fell my brain is just not working as it did.
Perhaps you never had ALS. If just having your fillings removed was a cure for ALS then about everyone on this board would have done that long ago. Doctors do not hold back this kind of information from people. These kinds of posts are nothing but hurtful and unkind to people who confront this disease every day and their loved ones that care for them. If you do not have ALS anymore because you are the only one on the planet who has ever been cured of it then you have nothing left to contribute to the members on this board.
I so agree with Mary!
Not open for further replies.