ALS moving fast

[MichaelJ]

Hello, I am new this forum and I was just diagnosed with ALS. I have been on Rilutek for just over a week now. I am not seeing any slow down in the disease. Is it normal for Rilutek to take time to work or should it start working immediately? I am trying to figure out if the medication is working or not. Is there anyone they can give me some advice as to what the vitamin supplements I should be using? I have started with vitamin E. and vitamin Co Q-10.

I have been devastated since the diagnosis and with the failing of my muscles find it difficult to find anything bright to think about these days. I would like to find out how others can cope with this illness? I’m trying to think of the positive things in my life and with the help of my family I think I can get back to a happier time. I need to find someone that can give me some advice. Please feel free to let me know anything and everything that you have to say on the subject of having ALS. God bless you and thank you for responding to my post.

[crystalkk]

Hi Michael,

Sorry, about your diagnose.
I am not dx yet, but have alot of progressive symtoms with everything else ruled out.
I don't know much about Rilutek, from what I understand it works differently on everyone.
I think it is supposed to slow the progression, but it is not going to change anything that you have already lost.
There is a search box if you type in vitamins, it will give you the past posts were they talked about vitamins.
You will be able to get more advice and questions answered on this forum than from your dr. It is a great place to vent also, everyone understands how you feel.
It is a horrible disease and it is normal to feel the way you do. You seem to be thinking in the right direction
about trying to stay positive.

How long did it take for your dx. Were you diagnosed by ALS specialist?

[MichaelJ]

Hello Crystal,
Thank you for the quick response. Thank you for all the good information. The on set of this problem started back in May with a little bit of muscle loss, then in August I noticed slowness in walking, that was followed by a fall. I went to an urgent care center that referred me to an emergency room of the local hospital that had the neurologists on staff. The emergency room determined that it was not life-threatening and discharged me. I was then referred by my doctor to a neurologist that neurologist diagnosed the problem as CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). So after receiving the treatment for CIDP, I was discharged to the acute rehab center where I worked on skills to a take care of myself again. Soon after the discharge from the acute rehab center I was notified by my neurologist fits I had a nether appointment with a second neurologist. At the first meeting with the second neurologist I was told that it was ALS. I was told that I needed an EMG to confirm the diagnosis, the following week I had the EMG and the neurologist confirmed the diagnosis of ALS. This neurologist is a specialist with ALS.
I just visited my rehabilitation doctor and he explained to me that ALS is a disease that is diagnosed by exclusion. He stated that there are still some of my symptoms that do not match up with a diagnosis of ALS. Although I desperately wish that it this is not ALS I know I have to deal with the diagnosis of ALS.
I have gone from walking in August to being wheelchair bound in September. Now I find that my upper body strength is leaving quickly.

Thank you,
Mike

[John1]

Hello, I am new this forum and I was just diagnosed with ALS. I have been on Rilutek for just over a week now. I am not seeing any slow down in the disease. Is it normal for Rilutek to take time to work or should it start working immediately?

Hi Mike,

Sorry you have to join us. I remember well how devastating the first few months were following my own diagnosis. I'm not sure what information you have on Rilutek. Any benefit it does provide is marginal at best. I have seen literally hundreds of posts on rilutek and never one that noted it slowing progression. In fact if you look at the early trials, it didn't claim to actually slow any specific symptoms except death itself. The major study claims that, for the average PALS with a 3-5 year life expectancy post diagnosis, his life expectancy will be extended by 3 months.

On the brighter side there are several experimental therapies under development that promise some real benefit and since you have just been diagnosed you might be one of the lucky ones to still be around when they become available. VEGF, lithium and both adult and embryonic stem cells are some of the more hopeful ones. In particular you might want to look at the lithium therapy soon. A limited trial in Italy reported this month that it stopped progression in all 16 PALS in the trial. More details should be out over the next several weeks.

John

[crystalkk]

Hi MIke,

Did you even think about getting another opinion, most people on this forum have gotten at 2 or 3.
Yes it is a process of elimantation, and you want to make sure everything is eliminated.
Even your rehab dr said some of your symtoms don't match up with ALS.
Was the dr from an ALS clinic.
If you go to the MDA website and but in your zip they will give you MDA/ALS clinics in your area.
It just seems alittle strange that you were told you had als without even having an emg first.


Do you know what other test you have had? you want to make sure you had everything.
most important how are your reflexes? are they brisk?

[MichaelJ]

Hello John,
Thank you for your response I guess I was misinformed about Rilutek. I thought that the medication was designed to slow the loss of muscle mass. The part I don’t understand about the diagnosis of ALS is that not much has changed since the days of Lou Gehrig. With the exception of the medication to rest is pretty much the same treatment that he went through. I am still struggling with the diagnosis to the point where I think I am angry at the lack of options. I am also struggling with the decline of my body I find it is getting weaker each and every week. I can see the difference this week as compared to last week, and not being able to find a comfortable position to rest in is miserable.

I am excited to hear that there are potentially new therapies coming along but the experiments that I see today seem to be very, very few. In the research that I’ve done I think that the VEGF was tested back in 2004. As for the lithium I have only found information that is promising. I hope to see some testing in the near future, but I fear that the progression of the disease in my body is going way too fast.

Mike

[John1]

Hi Mike,

I share your frustration with the pace of research. It seems that about every 6 months to a year some amazing "breakthrough" appears that then fails to pan out in trial. But to me there is enough evidence in the lithium trial to give it better odds than the previous ones. It appears to be bona fide research, the trial was on people not mice, there were enough people in both the placebo (rilutek) and lithium groups to give statistically meaningful results, the trial was long (15 months) and the results were startling and not just showing incremental improvement. Of course this is all based on a poor translation of an Italian abstract. Still I am optimistic that more hard data will become available in the next few weeks. If I were a fast progressor I would jump on the self-medication bandwagon now. Properly monitored lithium medication seems to pose few risks. It also appears to act quickly as a neuroprotectant.

John

[MichaelJ]

Hello Crystal,

I am working on getting a second opinion as we speak. My doctor got me in to the ALS clinic the very next day. As a matter of fact the ALS clinic works from his office. I have been signing up for the MDA/ALS clinic’s wherever possible.

I’ve had MRIs, blood work, muscle biopsy, nerve biopsy, and two EMG’s. As for my reflexes they’ve been gone for quite some time.

Mike

[crystalkk]

Hi Mike,

Sorry to be asking so many questions.
Just trying to send something alittle positive your way. Usually with ALS you have brisk reflexes.
What about a spinal tap did they do that?

[MichaelJ]

Hello Crystal,
You don’t have to be sorry about asking too many questions as a matter of fact they help me put a sane aspect to this madness that I have been going through. I want to thank you for the positive reinforcement it does help quite a bit.
Yes there was a spinal tap done which I thought showed up clear, but now that I think about it maybe I should double check the results of that spinal tap.

Mike

[771]

Mike,
The biggest mistake i made after i was told i had ALS at 40 yrs old, was that i did'nt quit working, and travel the world while i still had the chance! Now at 43, i sit in my wheelchair wishing i had just quit, and liived like , there was no tomorrow!

GOOD LUCK
RON

[geehdee]

Hi Michael
I am another zonie with ALS. Who is your doctor? I was diagnosed after several months of testing (including several EMGs) but probably have been ill since 2004.
I am also on Rilutek but I think I've read that we won't actually be able to "feel" the drug working. I will be entering a clinical trial being conducted soon at Good Sam. I am sorry to hear how hard a time you are having. I went through the same flood of emotions before my dx, but since then have been doing all I can to make my life easier. Can't walk at all and am now losing the use of my hands, which will mean the end of my job fairly soon. But I've lots of friends and family to help out.

After the initial fear, anger and resentment, I realized that today is the only day I am sure of having, just as it's always been. The same things make me laugh today as last decade and I think I've been very lucky to have had all the good times I've had. I am scared and feel helpless some times, but then I look at my granddaughter's face feel grateful because although her grandfather didn't live to see her smile...I did.

Take care and comfort from this website.

[CindyM]

I realized that today is the only day I am sure of having, just as it's always been.

That about sums it up for me. This is the attitude that helps people cope, from what i can see. But it takes time to reach this point. You've been given a blow and you must give yourself itme to recover emotionally. Welcome to the forum, Mike, although I am sorry for the reason you must be here. Cindy

[Carolan]

Mike, I am sorry for what you are going through, especially with how fast this disease seems to be progressing in your case. Did your doctor go over the symptoms that do not match ALS? My mom doesn't have the upper motor neuron signs, but in spite of the typically slower progression for Progressive Muscular Atrophy (the lower motor neuron disease), her progression has been very quick. Still no upper motor neuron signs, though. One problem is with the labels that these diseases are given. Motor Neuron Disease seems to encompass a broader spectrum of symptoms and rates of progression than the more traditional ALS label allows. Anyway, first I would look into what does *not* fit ALS because maybe there is something the doctors have missed. I assume that your bloodwork looked for Lyme Disease, Diabetes, etc., but you should make sure.

As for advice, the most important advice is to live your life the best you can. Be the person you want to be, both inside and out. Try to control as many factors as possible in your life, which will become increasingly important as you lose control of the outer aspects of your body. Find the little things that you have power over, and acknowledge those things. And cherish every moment that you have with your family. These are things that everyone should do, even the healthiest individuals in the world, but so many of us forget about how valuable our time on this earth is until we are faced with our own mortality. Any of us could die at any moment--with or without warning--so we should never take anything for granted.

If you do indeed have ALS, get on a good vitamin regimen, and start thinking about the major decisions you will face, especially whether you want to be vented if you develop respiratory failure. These issues can come up sooner than you anticipate, and it's best to have an idea what you want to do, even if you end up changing your mind during the actual situation. My understanding of Rilutek is that it extends life by about 3 months, but the disease will still progress. Become educated with all aspects of your disease so that you will feel more like a decision-maker and less like a victim. But in the end, anyone who is subjected to ALS has my sympathy because it's a horrible disease that no one deserves. Still, if you have just one more good day left on this earth, well, that's more than some completely healthy people will experience.

[MichaelJ]

hello Ron,

Fortunately I have been able to see a large quantity of the world not everything I wanted to see but a fairly large quantity. I’m still wrestling whether I should continue working or not deep inside me and I want to work but then again I think it is the weakening conditions and how my muscles were giving up on me that is making me think that it is prudent for me to stop work now. But I have the challenges of paying the mortgage, I need to find transportation where I can move my electric chair into, and of course there’s my healthcare. I’m not sure where my funding is going to come to pay for everything that I need, I know the there are a lot of organizations out there that loan things out and have grants but the to haven’t been able to tap into those yet and I guess that is my next challenge.

Mike

[MichaelJ]

Hello,
Yes my doctor is Dr. Sivakumar, he has offices in St. Joseph’s Hospital and an office in Scottsdale. Which trial are you attending at Good Sam? There is a trial that I will be attending at Good Sam too, so I might run into you during the trials.
Most of the problems I have is dealing with the failure of my body I am not able to do things today that was just able to do two maybe three days ago. It is so frustrating at times to know that I can’t even help move myself at times because I just don’t either have the strength or the agility to do what is needed to move. I am well overdue for a change of luck and something has to change and make it much better for me but I guess I will have to wait and see.

Mike

[MichaelJ]

Hello Carolan,
I commend all the people who are forced to take care of people with ALS it’s such a terrible disease and the fact that there seems very few people really are interested in eradicating this disease astounds me. But hopefully we can generate more support and try to get more funding to help in the research and eradication of ALS.
I’m trying to learn as much as I can about to do disease but I find it to get overwhelmed with all the literature that is been sent to me so far and I’m going through it book by book. Most of the information into reaffirming the information that previously read and it’s a rehashing of the information I’ve already read. But I am getting into the habit of writing questions down now sir so I can ask the doctor when I see them.
I have started into a pretty good vitamin regimen now. I am trying to find out what other vitamins might help other food additives were ways of increasing my protein. But I can’t figure out is what is the correct amounts in some cases.

Mike

[quadbliss]

Mike,

Applying this principle is very helpful when confronting a difficult life circumstance such as ALS. If you habitually focus on the "bad things" that are happening to you and repeatedly cultivate negative emotions, the Universe will dutifully provide you with more situations that generate these thoughts and feelings. On the other hand, if you work to cultivate positive thoughts and emotions, even gratitude, the Universe (God) will comply by providing an abundance of positive experiences. It (he) will manifest more things for which to be grateful. I use my mind (the only thing I have left, but also the most powerful tool I ever had at my disposal), to deliberately create peace, understanding, compassion, and well-being in my life. This really works.:-D

Mike

[vmd]

"Fortunately I have been able to see a large quantity of the world not everything I wanted to see but a fairly large quantity. I’m still wrestling whether I should continue working or not deep inside me and I want to work but then again I think it is the weakening conditions and how my muscles were giving up on me that is making me think that it is prudent for me to stop work now. But I have the challenges of paying the mortgage, I need to find transportation where I can move my electric chair into, and of course there’s my healthcare. I’m not sure where my funding is going to come to pay for everything that I need, I know the there are a lot of organizations out there that loan things out and have grants but the to haven’t been able to tap into those yet and I guess that is my next challenge. "

Mike, I empathize with you. I am solely financially responsible for my young daughter and my ex-wife, diagnosed with breast cancer. I will have to continue to work until I can work no longer. I don't believe I really have a choice, but to do this.

quadbliss:

I have been thinking recently, that even when I can no longer move, I will still be able to pray. This idea has brought me much comfort.

[CindyM]

And try not to keep mental lists of all the things you need to solve, Mike. It just overwhelms you. Better to make one long list (so you will have some direction) and put it away as soon as you select one small thing from it to work on. Now you have 2 tasks at hand, and only two: work on the thing from your list and work on keeping positive and feeling grateful, like Quadbliss says. His idea will make the first task go easier. Completing the first task sets you up to do another. Pretty soon everything is working out. :-D Cindy

[MichaelJ]

Hello Carolan,
This my doctor did not really go through the symptoms that did not match except for one or two. Most of that I think was due to the fact I was pretty much traumatized during the session. So a lot of it was kind of a sense of euphoria in that I truly do not remember our want of what transpired after he gave me the diagnosis. I’m hoping now that I’ve had time to think about it and some time to talk to other people that I will be able to put together a list of questions and I think that would be one prominent question that I need answered. So now I have the daunting task of trying to find all the symptoms for ALS and then bring those along with me to my next doctor’s appointment so I can list which are different. It could be that I have had ALS for long. A time and just had not noticed the symptoms. But I don’t know if there’s any way I can rural you tell when I actually started the first show symptoms of ALS.

I have a lot of support here; I have my wife two daughters, a son, my mother, and four brothers to count on. They have been such a tremendous help in helping me deal with the diagnosis. They have been here frequently making modifications to the home, building ramps, making changes to the furniture so I can use the House with a little more ease. Plus my two daughters of them so good in helping me with my range of motion exercises and getting me around inside the house, running errands for me.

One of the first things I did after getting the diagnosis is to start on an expanded vitamin regiment. My brother who is a chef is guiding me with the nutritional guidance and vitamins. I know we have already started to change my diet a lot of my favorite foods are no longer available to me so I have to deal with that and know that it is for the good. My hope is that maybe once in a while I could sneak in some of my favorite foods just so I can have a taste of what I loved to eat.

Mike

[MichaelJ]

As I read each and every post I get the feeling that there is a lot of work that needs to be done in supporting families that the breadwinner has ALS.is it time since we get each and every person to express our outrage to Congress and see if we can change the tide. I know is I get weaker and weaker I find it harder and harder to do even the most mundane task. I find it even harder to open up an envelope. While I know that I can do a lot of task using the keyboard and a mouse I know the day will come where this will not even be an option for me and at that time all I can do is pray. I pray each and every night the things will change in the very, very near future. And as I talked to more and more people it is surprising how many people were not aware that ALS is still not curable. I have been working since I was 18 years old and I’ve had steady employment that entire time. Now that I find things are really going my way I am going to be robbed of that enjoyment. Next April I will be celebrating our 25th wedding anniversary and I was planning a cruise. But the likelihood of going on a cruise at this point looks kind of dim, I am hoping that I will be able to go but I have to wait and find out. My daughters are signing us up for an ALS walk that occurs in January, we are trying to get all of our friends, there friends, family, and of course friends of family to attend.

Mike

[771]

Mike,
Go ahead and book that cruise, and tell yourself that you are going to have a great time! I find, that if I have something to look forward to, that is a positive thing (NOT ALS) ,it gives me something to push myself torward ,and makes me think positve about the future.
RON