I believe I have ALS

[Mike87]

Hello this is Mike. I have never posted in a forum before, so hopefully I'm doing this correctly.

I'm almost 52, I am athletic or as athletic as I can be at 52. I still lift weights and use elliptical several times a week. I have a desk job and sit for extremely long periods of time, and am about 20-30 lbs. heavier than I should be. With that said over the last couple years I feel like my legs are getting weaker, i have been chalking this up to old age, being overweight and lack of movement from my job.

Even though my legs feel weaker when I walk, I can still lift the same amount of weight in the gym. This has been the feeling for the last couple years, with a slight increase in weakness, if that makes sense. I missed a couple workouts last week and was traveling, when I got home, I did my work out on Monday. When i was done i went to bed and the next day my legs felt extremely weak and stayed weak each day after. Not a sore weakness like you would get after a workout, a different type of weak. The same I have been feeling the past couple years but just significantly worse.

Today is Friday, 4 days after my workout and I was able to get into a general doctor. I explained everything that I am explaining here, he gave me a referral to see a neurologist. The earliest I can get in is in 6 weeks. The general doctor doesn't know what it could be besides, MS, ALS or polio and said no one in the US gets Polio. He did order a bunch of blood work that he will review in 2 weeks when he is back from vacation.

At this point, I probably have done what I shouldn't have done, but I keep researching what can cause weak legs and I end up with the same conclusion. My wife has been researching too, she is more optimistic than I am in this situation. She thinks it could be arthritis. I don't know much about arthritis but I feel like I would have pain sitting, walking or working out and I don't have pain. Just a weakness that makes me think my knees will buckle at any time. I want to be optimistic with her but have not been able to come up with a realistic alternative to ALS.

Waiting 6 weeks for the neurologist and then the results is going to be difficult, especially after leaving the doctor today and him thinking it is probably ALS or MS. I'm not sure if he really believes that or has no other opinions with what it could be based on what I'm describing. He did not run any tests, didn't feel my leg muscles, we just talked. Maybe that is common because he is not a specialist, but I'm in a dark place right now. I can't stay focused on anything. I have work to deal with, 3 kids and many others things I need to be working on but can't stay focused. I do understand no one on this forum will know if I have ALS or not but any opinions or things I should do while waiting 6 weeks would be much appreciated.

Thanks
Mike

 

[ShiftKicker]

Hi Mike,

Welcome to the forum. We do ask that people read the following link: Read Before Posting. It contains an extensive, but only partial list of issues that share symptoms with ALS. It also contains a great description of the difference between clinical weakness and feeling weak. While it may seem like forever away, 6 weeks is not that long off. A proper assessment by a neurologist will provide much more in the way of information and will be more appropriate than whatever you read online.

What to do in the meantime? A physiotherapist might be able to provide some help in the way of feedback about what muscles may or may not be weak and can likely help with a structural assessment and information about any structural issues or imbalance that might be contributing to your sense of weakness.

Take care

 

[Mike87]

Thank you for the Reply. My thoughts are all over the place I appreciate the advice on seeing a physiotherapist, I will see if I can get into see one. I know 6 weeks isn't long but the way my mind is right now it seems long.

Thanks again
Mike

 

[Mike87]

I read the "read before posting" and it provides a lot of good information. Many of the things it states almost makes it black or white if you have ALS or not (I'm still going to my neurologist in July).

Reading it gave me peace at mind for a while, but I know I have something and the general doctor I went to didn't leave me many options of what it could be, (just saying it was probably ALS or MS). I know he is not a specialist but it is really messing with me trying to figure out what it could be if not ALS. This site has provided me more understanding of what people are going though and the responses of what signs are more ALS related and what aren't.

The "read before posting" information says you can either stand on your toes or you can't. You can open a zip lock or you can't, not that it is difficult to do these, you either can or you can't. I can do these things, but can it be I'm in early stages? Or is the general consensus that if you ever think you have ALS you are already at the point that something has failed or can't be done?

Any feed back would be great

Thanks
Mike

 

[Nikki J]

I can tell you the date and hour of losing the ability to walk on my left toes Another member here reported going to the store for milk they put it in the trunk and drove home ,opened the trunk and couldn’t lift the milk

It sounds bizarre just as the fact that we do not feel weak while being unable to do things is hard for non PALS to comprehend.

You did not report what your gp found on exam- clinical weakness, abnormal reflexes. I will say whatever they found the diferential is far wider than they gave you

 

[Mike87]

Thanks for the response, my general practitioner did not do any exams. He gave me a referral to a neurologist and that is about it. He just said with weakness in the legs and no pain that it is probably MS or ALS. And now I need to wait until July to get it to see the neurologist.

I really do appreciate your response, I have been in a bad spot mentally. The information I'm getting from this site makes me believe whatever my issue is, it most likely is not ALS. I know July is not that far away, but my mind is driving me crazy and it seems like for ever. The stories and feed back from this site is helping to educate me as I do not know much about ALS

Thanks again
Mike

 

[Nikki J]

That was a huge jump without doing any exam at all. It is unclear that you even have clinical weakness. Clinical weakness even if present can have many many causes. A small percentage of ALS is genetic and there is a doctor who has studied genetic carriers for many years. He leads a group that has proposed slightly less stringent diagnostic criteria for carriers of high risk genetic mutations. In this proposal he speak of CLINICAL weakness and says that it is not enough to make a diagnosis even in these very vulnerable people because there are too many other causes of weakness.

My point here is that he doesn’t say rule out polio and MS and diagnose weak carriers because he knows there are too many other possibilities.

 

[Mike87]

I'm learning something every minute. I haven't heard the term clinical weakness before. I will research that.

Mike

 

[Nikki J]

If you had read read before posting it talks about clinical weakness and about failure not feeling. Only a clinician exam can confirm clinical weakness but usually failure is a good indicator they will find it.

 

[Mike87]

I did read it, but only once and probably did not understand the use of that term

 

[KimT]

I'd find another GP. If I told my GP my legs were weak, the first thing she would do was test for clinical weakness.

 

[Mike87]

Yes that is what my wife wants me to do.

I need to read up on what what the standard tests are for clinical weakness as I have not taken any tests, just conversation and now waiting.

 

[Mike87]

I apologize if it answers this on this site and I am not seeing it, but when someone with ALS experiences drop foot, does that mean they can not do that particular activity aver again? Or is it temporary and then reoccurring?

Mike

 

[ShiftKicker]

Loss of function with no return. From the Read Before Link provided:

Clinical Weakness—ALS is about failing, not feeling.
ALS is about failure—falling down, being unable to stand on your toes or heels, being unable to button your shirt, being unable to lift your hand, being unable to open a ziplock bag, etc. It is not about these things becoming more difficult. It is about these things being impossible… no matter how hard you try. If you can do normal things, but it is more difficult, you do not have ALS. If you used to be able to do 100 curls and now one arm can only do 50; that is not ALS. If you used to run 2 miles and now you can only run 1; that is not ALS. If you used to run 2 miles and now you can’t lift up one of your feet, you may have clinical weakness.

It really does happen that something stops working all of a sudden. It is generally one muscle so it will not be a whole limb, but the movement done by that muscle is suddenly gone. An example is a calf raise. It won't happen. Think of it like your wifi signal. You are surfing the net, then signal is lost and you can't do anything online no matter how hard you try or how long you wait for a page to load. This is what happens to a muscle in beginning ALS it has lost the signal from the nervous system that tells it to work. First it is one muscle, then another ,then another so the things you can’t do increase. This is why you see progressive weakness mentioned

Please let us know how your next appointment goes. Again, a physiotherapist can be of assistance with questions about strength and providing an exercise regime appropriate to your needs.

 

[Mike87]

Thank you for the response that helps me continue to understand all of this.


Mike