A call out to athletes- help- do I have ALS

[Nikkic]

Hello-
I am a very active athlete. I work out five days a week and generally am active on the weekends as well - I climb mountains as well as crags, hike, backpack, bike, ski, snowboard, backcountry and inbound. My father was diagnosed with ALS and passed away two years ago, so I am familiar with ALS.

my fear is that I am developing ALS and I don't know what to do or how to handle my thoughts and feelings. over the past few years, I have experienced increasing muscle soreness and weakness. Some of the suspicious things I have dealt with include plantar fascitis in my feet, which is unusual as I am not overweight. Nothing I tried cured it. Now I am experiencing fairly significant soreness in my legs and arms the day after I work out , even when it is a 'light' work out. At work I use a mouse at the computer all day and I have struggled with what I thought was carpal tunnel, and then I thought was tendonitis. But really, I think it is just ALS. Today I went to the climbing gym, after one climb I couldn't hold on to the holds and my muscles started immediately with pain. The pain kind of goes away after a little while, but the weakness is definitely there. I am thinking I should quite climbing. If I can't hold on to the holds at the gym it can be dangerous and of course a waste of time if I am not going to improve.

I submitted a post a bout a year ago with these same concerns. The replies were not very helpful in that people just said I was getting old. Well, I am 46, and that doesn't seem that old to me. Plus, I climb with people my age, so I have a pretty good sense of what people my age are capable of.

I guess, what I am asking is for the athletes on this forum who have been diagnosed with ALS to comment on the progression of symptoms that they experienced. Did you start to have thoughts like "gee, I should be able to do this" or " I have always been able to do X in the past", or "I feel like I am getting weaker not stronger despite regular work outs".

I am very aware of the steps of how to diagnose ALS. Quit frankly, the EMG is not useful until you are fairly advanced, and lets face it ,it is painful.

Please- any athletes, I would really appreciate hearing from you. I just want to know if what I am experiencing is indeed a typical progression. I can work on my anxiety, but glib responses about being old are not helpful.

thank you

Nikki

 

[joelc]

I don't know what to say to you but wanted to comment on the EMG statement you made. An EMG can pick things up a long time before you know something is wrong. By the time you experience problems about 50% of your neurons are already dead, so an EMG could pick that up long ago.

 

[LizT]

Nikki- Im sorry you are going thru with this. My PALS was very athletic when he was diagnosed. I will ask him tomorrow when i see him what it was like when he first stared to notice symptom. Again, im sorry this is happening and i am hoping that it isnt ALS.

 

[Alyoop]

Nikki
The pain in your muscles sounds more like a myositis or myelopathy than ALS. It could account for the weakness as well. It would be a good idea to go and get a refferral to a neurologist, who can both check you out and allay any fears that you are experiencing, regarding ALS. Your feelings about ALS are perfectly understandable considering the passing of your father, with this awful disease.

 

[trfogey]

I am very aware of the steps of how to diagnose ALS. Quit frankly, the EMG is not useful until you are fairly advanced, and lets face it ,it is painful.

Sorry to hear about your father, but the factual errors that you make in the second sentence above cast doubt about the truth of your first sentence. The best thing you can do for yourself is to leave the diagnostic work to a set of qualified physicians.

Additionally, unless your father's ALS was one of the familial types of ALS, your chances of developing ALS are very low. Your symptoms could be caused by many problems, including overtraining, so why jump to the worst conclusion without having the proper testing done?

Good luck.

 

[SMillheiser]

Nikkic,

If there are no other cases of ALS in your family going back a generation, it is highly unlikely that you would have it.

Stu

 

[mytwoboys]

Nikki -

I agree with what Joel said about the EMG. My husband's only "symptom" in 2007 was that he had difficulty opening a potato chip bag - he couldn't pinch his thumb and index fingers on his left hand very well - he was still working out, running, dirt-biking, everything he had always done and didn't notice anything else. The EMG picked it up right away.

 

[KC2U2]

Can't say I was overly athletic, but I owned a bedding store and unloaded mattress trucks about once a week. My first sign was when I began having trouble lifting the mattresses. I actually thought I had hurt my shoulder; leg weakness and foot drop started about 4 months later.

As I stated in another thread, I didn't find the EMG at all painful and if you are really concerned you should definitely see a nuerologist. Hope you are just getting old and will continue to do so for another 50 years. ;-)

 

[LizT]

Nikki- im sorry. i didnt get a chance to talk with my PALS about your situation today. But as soon as an opportunity comes up, i will talk with him. Sorry if this is leaving you hanging.

 

[Nikkic]

HI All:

thank you for the thoughtful and caring responses. It was helpful! I only wish I were over-training but alas, the amount of work-out that I do would have to be tripled to even approach the level of training that athletes do for say triathalons marathons or the like, so I am confident that is not the problem. I actually wish I had enough time in my day to over-train but work tends to get in the way.

I think for now, I am going to make an appointment with a physical therapist who can further help me with the post-workout soreness and weakness problems. I am also going to take good notes about my exercising to make sure I am not mis-perceiving things. I know that the best thing for me to do is not to jump to conclusions. I also know this is extra hard for me given my experience with my father. He was not properly diagnosed and his diagnosis was actually missed by at least four physicans - even when he had essentially lost complete function of one arm and was regularly slurring words and tripping so it wasn't a situation of subtle symptoms. Nonetheless, I know that there are very competent physicians out there, so please don't mis-understand my viewpoint as anti-medical, but rather a realistic appreciation of the limitations of diagnostic tools and the fact that physicians are humans too. I also tend to worry a bit about health insurance and life insurance. I would be taking a big risk to even seek evaluation. Most insurance companies can and will deny you insurance if they even suspect something that is serious like ALS. As my work situation is somewhat questionnable in the near future, I need to consider these things as well. It is a sad situation we have to deal with in the USA with regard to health insurance.

I too hope that I get to become what I consider old... lets say at least 90. You know 90 is the new 80

If anyone else wants to post perspective from the athletes viewpoint, I will still be checking and eagerly welcome more information.

thank you

Nikki

 

[Beach61]

Its strange that you posted this because I am in a similar position ( no family history).

2 years ago I experienced a series of symptoms. Initially I did not know what it was but thru testing I began to fear ALS. The more I researched ALS the more convinced I was that I had it.

After going thru every Neuro test there is I still was convinced despite doctors telling me otherwise. As time went by and I did not progress and after pestering many PALS on this board with PM's I began to get the disease out of my mind, as I did that the symptoms went away! Part of my therapy was increasing my training.

For the past 2 years I have been a work-out machine, I am a road biker and am in the gym at least 6 days a week. In the last 2 months again have been experiencing a strange feeling in my right arm and right leg. My right arm feels weak and it gets sore after a workout. My right hand sometimes feels stiff and awkward. My right calf often feels that its about to cramp ( but has not)

Having gone thru the " I think I have ALS" scare I am well aware of the contradictions to my fear. While my right arm feels weak it is not, I can still lift the same amount of weight and for the same number of reps that I could before the feeling. While my right hand feels stiff and awkward I can button shirts open jars etc. While my right leg feels weak it is not I am still able to ride hard up hills and I have not had cramping. Having been thru several Nuero testing I know that going to the Doc would not reveal anything. I can walk on my toes and heels etc.

The thing that keeps me wondering is why is this on my right side and not left. I fear that this is the first stages of the disease and that because I know so much about ALS, I am aware of what is happening.

So to give you my 2 cents... Give it a little time to see if things improve. Go the PT and see if this helps. Stop training for a week and see if things improve. If your taking a statin stop see if this could be causing muscle issues. Then if after all of that you are progressing with your weakness then go to a good Neurologist and get tested.

If all I read is true, ALS will soon show itself!
.

 

[Nikkic]

Beach 61

Wow, thank you. That is a very interesting and helpful perspective. I too have wondered why my arm issues at times seem very unilateral. In climbing, the pinch grip strength is so important which is why I have noticed how weak mine is. I too thought about increasing the training, but so far the pain the day after a work out is almost too much. I have resisted taking anti-inflammatories but I may need to relent in this area. It is so interesting that you were able to put it out of your mind for a long time. I posted to this forum about a year and a half ago, and same thing, I thought well, if it is ALS, it will eventually progress and there will be no doubt. So the best thing is to just go on with life and enjoy it. I was able to do that until just recently when I started having problems again, mainly the incredible post work-out soreness and distinctive muscle weakness. However, I think all of you are correct in that the best thing is to just figure out a way to deal with the fears, and enjoy life. I plan to see the physical therapist, that will be very helpful. I really hope you don't have ALS.

take care and embrace life.

Nikkic

 

[timesup]

May i ask a few questions?
i also have onsided issues (all left side) - i recently was diagnosed by a bone and joint dr as having brachial plexus- and the pain in my leg (hip-rear-calf-footpad and arch) was just a muscle issue- so my questions
#1 can an EMG detect the renervation and innervation and fibs and whatever else-that makes it a dirty EMG- early on in this disease
1A if so how early? days weeks months years?
#2 does the EMG need to be in the exact location of innervation and denervation or does it just have to be close to one of the muscles that is dying-(so if the test is done in an ajoining muscle will it detect it)
#3 In ALS as an athlete-do we feel symptoms not usually associated with ALS? like pain?
Burning? twitches? perceived weakness?
3A or are the above symptoms actually ALS symptoms?
#4 if you have the above symtoms-how long would it take to show full blown issues with the muscles physicly? or with an EMG
#5 does atrophy happen before symptoms or does it happen after you are diagnosed
#6 given in a percentage what is the first symptom? then what is the second? or is it a combination of symptoms?-EG numbness? lack of strength in one limb? atrophy noticed?
#7 once you noticed your first symptom how long till you were obviously headed twords an ALS diagnosis?
I ask all these questions for myself and my healing process as i dont think i have ever dealt with my father and his ALS- i have continued to think i have ALS issues since 2006 when my whole left side went to hell in a handbasket and really has not recovered- as i still have left side issues and i seem to be gettin worse- foot pad or arch atrophy as an example
so i do not mean to discount your disease in any way- as i have been close to it- i just ask if you would give some of your objective opinions and actual experiences

 

[dphs]

In Apri,l I went to a neurologist because I felt tingling in all extremities. I also had twitching randomly throughout my body. In addidion, I had right and left hand aching on and off. He said I did not have MS from MRI and referred me to an als/ms specialist in July. This specialist did not think I had either disease but did note brisk reflexes. In late summer, I noticed that I had fasciculations in both my feet/lower legs (I could see and feel them) depending how stressed I felt. I never felt them when I was jogging. At the end of the summer, I felt very achy in my arms after working hard in the backyard garden but no weakness. In September, my arms ached for about 4 weeks all the time. Now when I look at my arms they both look different. They look like they have atrophy with saggy skin underneath. I also have sharp pains sometimes in my arms depending on the directions I turn them. I went back to the gym about 2 1/2 weeks ago thinking I could try to tone them up with light weights....but they both ache a lot afterwards. I still feel fasciculations in my feet/legs. I don't feel that I have weakness because I still can do the same things that I did before. Does this seem like als.

 

[timesup]

No
it does not