Likelyhood of having ALS

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NimbusTower

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Hey! Apologies, I wrote a book for you guys. I figured it may make your life easier to have something well written and detailed.

So, we all know why I am here, I'll cut straight to the story. Also, I have read the pins, as well as other sources.

I am turning 30 in a few months

Story

I have been having stiffness and cramps in one leg for an unknown amount of time. I have been brushing it off for a while now as something like a pulled muscle. I estimate it’s been happening for 6-8 months, but it has been getting worse. I saw a doctor for it maybe 2-3 months ago, she sent me to get an ultrasound and ruled out blood clots. I was told to come back in a week if it continued. It continued but I didn’t go in until about a week ago because I have been busy. Since I first saw her, it has gotten weirder. The stiffness/cramps became more persistent and go away almost never. Also, my leg randomly does not want to do what it is supposed to. I could be walking, and my leg will just not move, ill smash my toes into the ground, maybe drag my foot and stumble. Ill list all my symptoms in detail after the story. Anyways, I went to see the doctor again. She referred me to an orthopedic specialist, a neurologist, and a rheumatologist. I asked her what she thought it could be. She basically said she has a gut feeling its neurological, but there is a long list of possibilities and that’s why I have three referrals. Unfortunately, the pandemic is still wreaking havoc on the health care system in my area, and it will be 10 months before I can see all of them for the initial visit.

Story continues, I went home and looked some of these doctors up and what it could be, I’ve never heard the word rheumatology before in my life lol. Long story short of the many things it could be, ALS is the most awful thing it could be.

Concerns

This is not the only forum or disease I am asking questions about; I have not yet jumped to it MUST be ALS. My HOPES are that this posts responses will keep it from ever getting to worrying like that. My concerns are with this forums pinned messages. It stresses the importance of clinical weakness and if you don’t have it, you most likely don’t have ALS. It states that ALS is about clinical weakness and is the first symptom. However, reading other ALS forums and resources it seems to indicate it can often start with just cramps that come and go for a long period of time. There are a hand full of older men I found lightly browsing who said their symptoms started with 1-2 years of stiffness and cramps before weakness was shown. Then from there it was another 1 or so years before the twitches even began. One of them is still able to walk 10 years later with a cane for short distances. It seems like nothing is that simple about this disease and that it almost never progresses the same way between any 2 people.

Related Symptoms

Stiffness: Estimated to have been happening for 6-8 months but has gotten progressively worse and more persistent. It feels like my calf is one solid unit if that makes send. I feel like I am swinging a heavy rock-hard piece of meat most of the time now. It started by coming and going for days or weeks at a time. But it’s now been going on for 24 hours a day for 3 weeks now. I can have stiffness without the cramps. The stiffness has been always present now for three weeks.

Cramps: I can best describe the cramps as a dull feeling ball deep in my calf. ALL of this becomes more pronounced when flexing my leg, but I do not have to be flexing to feel the cramp. The cramps as of now come and go. I never have cramps without stiffness.

Weakness: I do not THINK I have any. I can do squats; toe raises and lunges. I can do squats and toe raises with added weight, but I now have balance issues, and the leg with problems occasionally buckles/gives out and I fall to a knee. The reason I say I THINK I do not have any weakness is because the walking problem confuses me. It is like I must try to move my leg if that makes sense. I feel like my leg is often now not a connected part of my body, it’s a heavy stiff piece of meat that takes a significant amount more effort to move. Then there is the part where my leg occasionally refuses to move at all, and I stumble.


What I think are unrelated symptoms

Twitches: Everyone who has anxiety about ALS seems to worry about twitches. I have them but have zero concern about them. I have had them forever; it is what a few cups of black tea will do to you.

Other pain and cramps: My forearm/wrist have cramps and stiffness on the same side. It tends to get aggravated by typing things like this long post. Its relatively new but I think it’s more likely to be related to typing or weightlifting.

Finally

I’m not expecting a diagnosis here, just insight into if it is a weak, small, moderate, good, or strong possibility. I know statistically it is a small chance, but what about symptomatically. Please don’t be afraid to be brutally honest if you think there’s a chance it could be ALS. I’ve already got insights that it could be lupus or MS on their respective communities. Hearing that it is a good possibility to be ALS wont really hurt, however hearing that it isn't will help so don’t be afraid either way.

Anyways, I appreciate your guy’s insight. I’m not sure if I am having anxiety about it yet. I think I’m more looking at the most likely possibilities to preemptively calm my mind. 10 months is a lot of time to have to wait, and I’m certain the anxiety will kick in eventually, especially if the problems continue to get worse. So, I might as well get insights and education while I’m still somewhat of sound mind.
 

affected

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I'm sorry that you are going through this, I can see it is stressful.
I think that if there was a true concern you have a terminal illness you would have been fast tracked.
We won't debate what you read elsewhere, our pinned posts are our official position. It really serves nothing to throw stuff you read at us, nor to read all that and think you will figure it out before the doctors get to you.
If you really can't wait, or if you experience actual failure, return to your doctor and discuss your concerns.
Until then, try living each day. I am serious - you won't get a single day back regardless what this turns out to be.
All concerns need to be discussed with your doctor who can examine you and direct you.
I truly wish you the best as this diagnostic process happens.
We have experienced people here but no doctors, you need doctors.
 

NimbusTower

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First, I want to apologize if it felt like I was throwing things back at you. I did not mean that if that’s how it read. I think I was subconsciously fishing for an answer like sure it happens. It is a rare exception to a rare case for an already rare disease. Kind of like yeah, some people have heart attacks with no symptoms, but the overwhelming majority has symptoms type thing. Then there was always the risk of it not being addressed at all which I chose to take, I guess. I also am not looking to figure it out as much as gauge the odds, I don’t even want to debate what other said, just looking for as many opinions as possible, I guess. Again, sorry.

Is my leg randomly disconnecting from me when walking occasionally considered failure? That was the symptom that seem to really trigger my doctor for whatever reason.

Again sorry, I did not wish to debate. Only gather information, opinions and likelihoods.


I also kind of wish it were easy to get fast tracked. A lot of cancer procedures are still on hold indefinitely because of the situation. There was a lady on our local news who has had her removal postponed because of the pandemic, and now she is considered inoperable. It’s crazy out here.
 

affected

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Without examining you how can we say what you report with your leg is anything or nothing?
I truly am sorry - you are not exhibiting ALS symptoms that our experience discusses in the sticky note.
Our terminally ill and their carers can't take it any further. The sticky is there to prevent our members that are paralysed and breathing with machines from saying those same things over and again.
I do truly wish you the best and a speedy diagnosis. I realise that in this pandemic world things are slow, but honestly if they thought something really serious was wrong you would be seen or given something to go on.
Again, you won't get a single day back, try to decide what you can control and live what you have in the meantime.
 
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