I hope nothing I say will be taken as disrespectful to the many people here with ALS who face very difficult and challenging situations every day. But I need to vent a little, I am very confused and upset about my situation.

I was diagnosed with ALS August 4, at the UCLA neuromuscular clinic, which largely specializes in this and related conditions. So I presume they know what they are doing. I also reviewed the diagnosis with my personal neurologist here in town, someone I went to college with and know is very smart, and he agreed that it seemed correct based on my symptoms and test results.

But I still can't believe I have it. This is not just denial or refusal to face facts. I've read so many stories here about how people are when they are diagnosed, and I've never seen anyone like me. I just got back from an 8 mile run, and I feel great. I ran 12 last weekend, and I'm doing the Disneyland Half Marathon next Sunday. Yet my diagnosis was in large part because of the EMG results in my legs! They showed fibrillations, "giant" units, other effects which weren't there a few months ago, supposedly indicating a progressive process of nerve death. So my legs are supposedly dying, yet I am running 10+ miles on them. Does that make sense?

Now my ALS is bulbar onset. The first thing I noticed, in May, was that my speech suddenly became sluggish and slurring. My voice had also gradually been getting weaker and hoarser, my wife had been noticing that for a few months. So I saw the doctor, then the neurologist, and ran through the whole testing gamut that everyone here is familiar with. They also found, and I noticed too, a little bit of hand weakness. Eventually my voice, plus some dirty EMG readings in my arms and the progressive worsening of the EMGs in my legs, led to the diagnosis.

So here's the problem. My voice is what sent me to the doctor - but nobody except my wife and me can tell I'm having a problem! Everybody else thinks I sound pretty much fine. And the quality of my speech fluctuates a great deal. Last week I was at a conference and had to do a lot of talking, and it didn't sound right. I felt pretty down, with the ALS diagnosis and now I felt like I wasn't speaking well (but again, nobody seemed to notice). But this week, my speech has been better, almost normal. I don't think that's supposed to happen with ALS. If my speech was bad because of nerve death last week, the nerves didn't just spring back to life this week. I wonder if other people find their speech quality changing noticeably from day to day.

My hand weakness is another weird thing. Last year I had an episode where my left thumb tip went numb, and I also had weakness in my left biceps. I saw the neurologist, had an MRI, and they decided it might be arthritis in my spine compressing the nerve. I had some physical therapy and stopped doing my upper body exercises, and it seemed to get better. Now my finger extensor muscles are found to be weak, and my hand feels "funny" when I try to write with a pen. It's hard to describe, but the muscles in my hands feel kind of ticklish and I have trouble controlling the pen. I don't know what it means, but from what I understand, ALS does not cause changes to the sensory nerves, just motor nerves. So I don't think ALS could make my hands feel funny, and that makes me wonder if it is just my spinal cord arthritis acting up that is causing the hand weakness, not ALS.

Anyway, the point is, to me, my symptoms just don't match up with how I hear other people are at the time of their ALS diagnosis. Furthermore, I haven't gotten noticeably worse in the months since I first noticed problems. Sometimes when my speech is bad I feel like it's getting worse, but then I have good days as I have recently, and I realize that it really hasn't changed. ALS should be progressing.

I have tried to accept the diagnosis, to envision my future as this disease progresses. I imagine myself in a wheelchair, unable to move, unable to speak; feeding with a tube, breathing with a machine. I just can't do it. It's like imagining myself elected President. It is a mental image with no sense of reality to it. I am a healthy person, way above average in health in fact. Yes, a few problems have cropped up, some things are not working as well as they used to, but that is to be expected in middle age.

I don't know at this point if it would make sense to pursue yet another neurological opinion, or to simply go on with my life and wait for the ALS clinic doctors to decide that they've made a mistake (or, admittedly, for ALS symptoms to appear and become worse). I think in the end, all that matters is how I will be feeling in a few months or a few years. At this point I am inclined just to put this diagnosis behind me and assume that everything will be fine.

Again, I certainly hope that what I have written here does not come across as boastful or as attempting to put myself above people who are diagnosed with very real and troubling health problems. My heart goes out to all PALS, their families and caregivers. The many stories I have read on these forums are inspirational, testaments to the strength and courage of the human spirit. I just can't believe that I am on that same path.

Just writing out my doubts like this has been helpful, I feel better putting it down in text form. Thank you very much for providing a forum full of supportive people helping each other get through such a heartbreaking illness.

live your life the best you can and don't worry about the diagnosis. The first step in mourning a loss is denial. If denial works for you now, go with it. When and if your disease progresses, then you will deal with it. If you do have ALS, it's not like cancer. Early detection doesn't make a difference. The only thing is that equipment is better obtained early, before you need it, so if the progression starts to sneak up on you faster than expected, you may find yourself without the things you need. But anyway, live your life the best you can and be thankful for every day you can run!! That's all anyone can do.

Hal ... I hope you are right, and there is a mistake.

I pretty much was in the same mental place as you, although not nearly as vigorous physically because of my age. But at age 70, when my symptoms began, I was working out at the gym three times a week with a lot of treadmill work, in an advanced Pilates class once or twice a week, and quite active. My only problem was speech and swallowing, but my speech actually improved in therapy for a while. I was also the world's oldest "intern," working part time at an art gallery.

Even when I was dx with ALS, I was still going to the gym. Had to cut back on Pilates to a less strenuous class, but I ascribed that to age. It is only very, very recently that I have come to accept that this is going to affect my whole body (it's already doing so), and I'm going to have to deal with the whole ALS shebang. I just felt too good! I have had various problems (buttons, keys, etc.) but they all seemed pretty mild and manageable.

I'm not trying to bring you down, just saying that ALS doesn't make you "feel sick," or even feel weak. I feel just as I did before the onset, and it is a constant surprise that it continues to progress on and on. Yesterday, I discovered that I can still climb into the tub/shower, but now can't turn the water on (or off)! Same knob I've been pulling and pushing for 35 years.

So many PALS seem to have been active types ... firefighters, hikers, runners, etc. I agree with you that you are an exceptionally healthy person and in great condition, and it seems to me that this should lead to a very slow progression, if it is ALS. The more muscles you have, the longer it should take for them to fail. (?)

The thing that has kept running through my mind these last three years is, "I'm just NOT the ALS type!" I don't know what kind of type that is, but whatever it is, I don't feel like I'm it. I'm more the heart attack type.

However, probably none of us have ever been in the physical condition Lou Gehrig was in: he had the longest streak of not missing games in the major leagues until he was stricken with ALS. And his record lasted decades.

I hope you will be spared this disease. And neuros do make mistakes. (I'm on my fourth dx.) Even Dr. Graves can be wrong, I'm sure. I hope so!!!

Take care.

I understand what you're saying, and we do have some similarities (no marathons for me though)


Maybe I really am still just "in denial" but after its been a year since diagnosis? What bothers me the most is that even though I'm considered bulbar onset, I'm not a typical bulbar presentation.


It was my voice affected first, At first only other people noticed it sounded weak, or hoarse. They would ask me if they woke me up (phone conversations) or if I was sick. This went on for many months before I eventually had an EMG and it was positive for MND. My speech is quite variable, mostly still ok, My neuro's last written report said my speech was not normal, but I was still understood. ( For the longest time my voice did not get all that much weaker, but it is now.)

My swallow is affected quite a bit, and I have an absent gag reflex.

My eyes don't close tightly, I can't pucker my lips well enough to whistle,.. can't stick out my tongue, or resist against a tongue depressor during exam blah blah blah... so, obviously even I understand that I have bulbar weakness, but its sure not like most people on here who say that it was slurred speech as a first symptom.

My breathing was at 67% last clinic visit, and I have shortness of breath when laying flat. My CK is elevated.

Then,the arms and legs.... all are affected, but isn't ALS supposed to progress from one limb to the next, and the weakness distal before proximal? My weakness seems diffuse throughout each limb. For example, I know my fingers and wrists are weak, but I know my shoulders are too, and the right shoulder has more visible atrophy than my hands. This is not how others describe their progression.

So, of course I hope you're right and the docs are wrong, but I also find it interesting that some of what you describe applies to how I've experienced this. I have come across so very few who even mention having their voice be affected from the outset

Here's hoping that you don't really belong in "The Club"

Its so hard to describe how I feel about this damned disease.

How do I cope ? One day at a time with a bent sense of humor.

What about the future ? Take care of your affairs , wills , insurances etc now. Prepare to be gone and get it documented and then forget about it.

What about medical things ? Joined ALS Society , got registered at the various organizations that I will need later , Rehab center that I use now.

Am I in Denial ? Maybe, who cares. I choose to deal with each symptom as it arrives. I do not wait for it or worry about it. Its not worth it. If I fall down , I just get back up.

Whats happening now ? Left leg is un-reliable - walker full time now. Balance is bad at the best of times. Left hand is shrinking as muscles melt away, dexterity sucks. Have good arm strength , so I can still drive with left hand.
My voice is getting to be fun. When I am tired , I sound like a hair lip with a mouth full of marbles.
Roll in shower just completed , new garage with new porch lift under construction.
Also looking for a wheelchair van.

Am I progressing ? Well DUH ... aren't we all ? symptoms since July 07 dx Oct 08 , and I still am not in a chair yet. I think that's good .

Am I losing weight ? Hell no , I can eat with the best of em. Just takes a little longer. PEG scheduled for Sept 17. Don't need it yet , but wont miss a beat when I do.

Do I have down days ? Another well DUH ! But I can usually perk up within hours. Evil mischievous thoughts usually help .

Halfin, I hope this helps you out . Just keep moving forward.

Glen

Hi Hal. I am so sorry you are going through this. It is our hope you don't have ALS. But if you do, you will see that it comes on most likely gradually rather than bam and you're gone. It happens that way with very few. I suggest for you that you give it time while you keep learning about ALS and study what is happening with your body.

Realize that keeping up with your runs is not advisable if you do have ALS because it will deplete your strength rather than build it up. It is best to stay within your limits without tiring. If you have ALS you will one day see that things you used to do bring on weakness, sweats, and exhaustion.

Know that whether or not this is ALS, it doesn't change who you are or what is happening. A dx on paper is just that. It doesn't change your condition. And then you could have years before your lifestyle really changes. Every PALS is different in their progression and symptoms (with a few similarities too.) Just go ahead and do all the things you would like to, knowing that there will be certain limitations so take on things with caution.

This is something you will have to deal with..... whatever it turns out to be. Attitude makes a great difference in your quality of life.

My husband has had a dx for nearly 2 years now. He is beginning to struggle sometimes with swallowing. He staggers. He grows easily weak. He has a Bipap and has to take an afternoon nap. There are some symptoms only visible to me, but most people think he is normal for his age. (61) He has been treasurer for our local Elks Lodge for a year, still walks and drives and so on.

Take heart and listen to your specialists. I hope we can be of help to you here as time goes on. God bless.

Halfin, hope you are feeling better today! Everyone has given you such solid advice and just know that we are all praying for a cure! I most identify with Glen and that is pretty much where we are with it all. We take each day as it arrivies. You do want to apply for SSDI ASAP. Why work? Make the moments count and take care of the stuff that you do have control over. Rose, DH symptoms were ALL BULBAR and are rapidly progressing...:[ BethU, you constantly inspire me! Marjorie, great advice on not overdoing the exercise-I need to rein in DH at times. Hi fec139 and welcome to the club!

Hal,
I wanted to address the "sensory nerve" issue a bit. I know the Neuros say we don't have sensory changes, but--my feet were my first problem--sometimes "out of the blue" I feel like my feet are in very tightly laced boots. They actually are completely unrestricted when I feel that odd way. I've gotten messages from another ALS (bulbar onset) friend who describes sensory changes I've never experienced. I do have numbness in my feet, Hal. I've run them into barriers while in my wheelchair that would have had me yelling at one time. Now I still feel "hurt", but only fairly mildly. And, I'm another "super healthy" person who was physically active. I tried working out more when my feet were failing, trying to strengthen my ankles as an example. Yet, not too long before, I was doing ballet for exercise--it didn't add up. The advice Marjorie gave about exercise is on target. I believe that "we" cannot build muscle unless it's in an non-affected area of our bodies. We can wear them down faster than necessary, however. I hope you are right, and the Neurologists are wrong, Hal. But I also hope you'll play it safe and take a break from running.
Ann

Hal-



I think we all have to take control of our medical care, and get second opinions. Find a ALS Clinic in your area and make an appointment.
If they agree with the ALS diagnoses, then get your things in order. Apply for SSDI , lace up your shoes and run.....

I know that I only have PLS, but lately I have had a lot of new symptoms. With that in mind, I have taken time this summer to do things with my family; I wouldn't have taken the time to do before. The one thing these diseases make you do, is prioritize your life.

Get a second or third opinion; ask a lot of questions....Remember “Change is inevitable except from a vending machine"

" Don't worry" is written 366 times in the Bible.....and we still worry

Hal,

The quality of my speech has been variable. My neurologist felt like the rate of it was better when she saw me this last month than it was back in November. She said that even though fluctuations are not that unusual, that the amount of improvement she heard was not common. This mostly had to do with how quickly I could speak, rather than how clearly I could. In contrast, my voice was much weaker than during previous exam... As far as my voice goes, I may have good days and bad days, but overall its a steady decline.


Ann,

About the sensory aspect. It was explained to me at a clinic visit (because I was questioning my symptoms that didn't "fit") that even though ALS is a disease of the motor neurons, that it does not mean it always will restrict itself to solely the motor function of the nerve.

What you wrote made me wonder if you are leg onset?

Initially, my extra symptoms were dry eye, dry mouth and decreased sense of taste. They told me these were all still the same cranial nerves that showed the most evidence of motor deterioration. Later, I also developed intermittent problems with gastroparesis. And again, even though smooth muscle rather than skeletal, still controlled by a bulbar cranial nerve.

Thank you all very much for your replies. Everyone here is so kind. That is also helpful information about the variety of experiences people have had, I did not realize how much variation there is. My mood is changing from day to day; yesterday I felt invulnerable, today somewhat less so.

I need to decide pretty soon what to do about my running. I appreciate the advice to cut back, but it is hard - it feels like giving up. It's like changing my self image from fit, athletic runner to "victim of ALS" (I know people don't use that phrase around here, but that's what it feels like).

Of course if I really do have ALS I don't want to do things that will make it worse. And I suppose if I don't have it, and I don't get any worse, and they finally cancel the diagnosis, I could go back to running then. So it's probably the smart thing to do. But it is still hard.

Hi Hal,

Your moods will bounce around from crying at stupid TV shows , to laughing out loud at the most inappropriate times. If you warn the people you are around at the beginning you will find that most will understand . EL - Emotional Lability.

As for your running , I can only offer this advice. Its all about attitude and energy. When you are running and have to dig deep to keep going , this will become a bad thing. Consider your energy like a gas gauge on your car , when its empty its empty. I have found that if you the energy tank dry , it takes days to get it back. So , pace yourself and do what you can without going too far.

Glen

Rose--yes, I'm leg onset. I appreciate your insight about the sensory nerves. I was diagnosed at Hopkins, and doing the biopsy of sensory nerves was considered an option... which I opted out from!

Hal, Glen's advice given above about conserving energy is right on target. I find that it's also a changing situation. Having visitors pop in takes energy. Talking on the phone does, also. Two years ago I could "visit" for hours. Choose wisely what your priorities are, and enjoy now what you are doing, living "in the moment". It's one day at a time, and remember you do not have to expect to be afflicted with every imaginable loss, so please don't grieve ahead for that expectation. Just pay attention to your body... and don't "run the tank dry".

Ann

Hal,
You may want to consider banking your voice just incase it is ALS. By the time we heard about doing that it was too late.

Hal, I began having problems with my voice and swallowing and was breathing harder with less exertion. Thought I had lung cancer. Had lungs checked and they were fine. So maybe my heart, had that checked and it was fine. Then started noticing certain sounds were hard to say, throat felt like it had a lump, so, maybe throat cancer, went to an ENT and he said I had GERD, Gastric Esophogeal Reflux Disease. Wow, I never even had heartburn. So I took his medicine and things got worse. Speech got worse, breathing got worse, everything got worse. Then started having Layrangospasms. Boy those are fun, You think you are going to die because you can't breathe and then 40-60 seconds into it you find yourself starting to be able to breathe. Just a word of advice if you get them. CALM DOWN. That is what helps. Breathe in through the nose, little bits at first. And hold your chin to your chest and swallow. Not easy to do in the panic of not being able to breathe, but I have had enough of them to know what helps.
So after all this and a years worth of Doctors my speech became very noticible and luckily we have a friend who is a Doctor and got me in for an MRI right away. Nothing. On to the Endocrinologist for Thyroid Tests, nothing. Finally in December, 11 months after journey began, The doctor said, Time to go to Mayo. That is where I was diagnosed with Progressive Bulbar Palsy, possible (probable) ALS.
I can tell you that the first 6 months after DX is hell. An emotional roller coaster. I have EL so I got on a drug trial and now I have the meds to keep it at bay, Thankyou.
But after about 6 months, a sort of calmness sets in and you just take it a day at a time.
Now, I have voice problems, starting to have eating problems, and some breathing difficulties, but absolutely no limb problems. I play golf twice a week and run through my normal life just as before without talking too much. Got a computer that will talk for me and now, just got an IPhone that will talk for me. I still work full time and do everything I did before. So from here on I feel that everyday is a gift and I try to appreciate it. I will work for as long as I can, golf for as long as I can and then when I can't, I will have the memories of when I could. Shot 89 yesterday. Not bad.
Hang in there and live your life.
NancyS

Such great advice from all of you. I think the more we know about als the less we know. I think anything is possible, or not possible. All kind of different progressions and symptoms. Like all said before me, take it as it comes, try not to buy trouble. Enjoy each day, but listen to your body, rest when you need, have fun when you need, but most of all know that we are all in this together, and we will fight this together.

One of the biggest misconceptions about ALS I have discovered, Hal, is that it progresses rapidly for everyone. That's just not true. Some people can live a long time with this disease. For instance, I was dx only 9 months ago, but cross-checking with my past medical reports, I can confidently say that I had emerging symptoms going back to 2003. Others here have reported symptoms going back a few years or more before their dx as well. Others progress slowly even if their symptoms appeared a year before their dx.

As far as some symptoms coming and going to a certain extent, you have lots of neurons, which can pick up the slack of dying ones, which can result in fluctuating strength. It happens to me--that's the reinnervation process taking place.

So here's hoping you have a slow progression, but remember, don't work your muscles too hard--keep them strong but don't overtax them.

Thanks again for the helpful comments. I do hear what people are saying about conserving strength, but it's hard to accept because it's the opposite of what I've always understood, that exercise makes you stronger.

When I was a boy, in the 50s and 60s, you used to sometimes hear people say that exercise was bad for you. It was thought that the heart had only a certain number of beats in it. When they were used up, you would die. And exercise uses up your heartbeats faster, so it was bad. It wasn't until the 70s when jogging and aerobics became popular that this old belief seemed to finally die.

Now with ALS it's almost like that idea has come back, your muscles have only a certain number of contractions left so you better not use them up. It seems crazy but I guess the problem is that with the disease, the cells and tissues don't heal and recover the way they would do in a healthy body.

I guess I'm pretty close to deciding not to do my big race in December. My wife says that if I don't run it, she'll walk it and do it as a fundraiser for ALS. That's a really nice idea but it means I go from being a runner to being the symbol of a fatal disease that people are raising money for. It's a hard change in how I think of myself and how I am seen.

I still cling to the hope that maybe the diagnosis is mistaken and things will go back to how they were. We'll see I guess.

Hal ... what I was told by my neuro is that normally, when we exercise and stress the muscles, they rebound by growing stronger. With ALS, there is no rebound. When you stress an ALS-affected muscle, that stressed and weakened state becomes its new "normal."

However ... she said you can still exercise and strengthen the parts of the body that are not yet affected by ALS. Of course, in running, you are not building up specific muscle groups, you are building overall stamina. In my case, I continued with Pilates, using no resistance for upper body exercises, just range of motion, but continuing to use springs for resistance for leg work. Then my legs started to be affected, so it was all range of motion and stretching. Then I found even that to be too much exertion ... I was exhausted after a session ... so I finally quit.

Frankly ... I don't think anybody knows as much about ALS as we pretend to, including neuros. As a serious runner, you know your body best. I would use common sense ... I'm hoping they are wrong about your dx too ... and not try to push yourself right now until you are more certain of the dx. Don't take chances. They may be right. If they're wrong, you will be able to get back to your current fitness level.

ALS itself is a marathon, not a sprint.

"ALS itself is a marathon, not a sprint."

I like that analogy Beth! So maybe I can still think of myself as a marathoner. :)

I've been told I have PLS by 2 doctors, an almost retraction by one of them when I got more movement back in one shoulder (frozen shoulder syndrome, too!).

One doc told me I didn't look sick. Well, at the onset of something like ALS, PLS or MS, you may look and feel pretty good. In your case, you do (if the diagnosis is correct). I hope you remain looking and feeling good for a long time.

With PLS, I've had months on end where I've felt bad each day. I don't know if its because I'm use to it or if things have eased up but I've been "feeling" good even though I still have spasticity and cramping.

I guess I can say I've adapted. There you go! Word for the day - adaptation!

Zaphoon