My story so far

[braindeaf]

Hello everyone.

Like many people who post in this subforum, I am worried that I may have ALS. I am 28 years old. I have chronic back pain caused by bone cancer from my teenage years. For the last 4 or 5 years I have led a very inactive life style, not exercising very much at all. I have become very worried lately about ALS. In fact a few nights ago I was so anxious that I almost vomited.

Here's what's been happening to me:
2 months ago my knees started hurting for no reason, both of them. It hurt a lot to walk, especially up and down stairs. I've been doing physical therapy for my knees for the past two months and it seems to be helping, but not 100%.

Two weeks after my knees started hurting, my hands started hurting. They hurt to play video games, and they hurt if I type for too long or too fast. I do not have any numbness or tingling in my hands except the tip of the right pinky and right ring finger. My wrists will get very tired, and my hand muscles will get achey. If I play video games for more than 10 minutes or so, my entire hand will start stinging, both of them, and it hurts so much that I have to stop.

My GP send me to a Rheumatologist. I've had every blood test imaginable for arthritis and everything is negative. Also, I have not been having swollen joints (except maybe my knees?)

Two weeks after that (a month after the first symptom started) I started getting muscle spasms in my feet, then my calves, then my hands, arms, neck, you name it. The most common place for me to get the spasms is in my feet, legs, hands, and arms. The spasms are much worse when I am anxious, but I definitely get them even if I am not anxious.

I started suspecting ALS instead of RA once I started getting the muscles spasms and once I noticed that it looks like I may have muscle wasting happening. I do not have any obvious atrophy--if I do have atrophy, it is more or less the same on both sides, I think, but nonetheless I think muscle weakness explains my hand/wrist pain.

My shoulders have started hurting in the last two weeks, again, for what seems like no reason. They look weak but more or less the same on both sames, and I have pain on both sides. In fact there is a specific spot at the top of my arms that hurts a lot to press on--same spot on both sides.

I do not have clinical weakness, BUT I have signs that some limbs are weaker on one side than the other. For instance it is much more difficult for me to touch my right pinky to my right thumb than on the other hand. Also, it hurts a little bit and is more difficult to lift my left foot up when walking than my right foot.

So to recap, I have unexplained bilateral knee pain, pain in both hands, hands and wrists get tired very quickly, I suspect muscle atrophy but haven't gotten a doctor to evaluate that yet, and I have intermittent muscle spasms at many parts of my body which get worse with anxiety but do not require anxiousness to happen. All of these symptoms have appeared within the last two months.

I am grateful for any feedback you might have.

 

[gooseberry]

Have you been to a neurologist? Have you had heavy metals resting, electrolytes, and vitamin levels? I would suggest you see a neuro for these types of tests because it sounds more like anxiety or electrolyte issue than als.

 

[ShiftKicker]

Hiya-

Chemotherapy can result in long term nerve and connective tissue issues. Particularly if you received treatment while your body was still growing and maturing. Are you the member of any childhood/teen cancer survivors groups? I think you may find others there who are struggling with a variety of long term health issues as a result of blasting their body with chemo and/or radiation in an attempt to eradicate cancerous cells. If you are not, I strongly recommend you do- you may find others with your exact, or similar complaints. I think ALS is not something you need worry about. A rheumatologist is a good start- preferably one with experience in dealing with the myriad health issues that can arise from historic cancer treatment.

Best wishes

~F

 

[braindeaf]

Have you been to a neurologist? Have you had heavy metals resting, electrolytes, and vitamin levels? I would suggest you see a neuro for these types of tests because it sounds more like anxiety or electrolyte issue than als.

I was tested for kidney function, liver function, lupus, many kinds of arthritis, autoimmune disorders, CBC. I'm not sure if I've been tested for electrolytes, but I was not tested for vitamin levels. I mentioned vitamin levels to my rheumatologist and she ignored me.
I have an appointment with my GP and rheumotolgist this week again and I'll bring it up.

Also, I haven't seen a neurologist yet but hopefully I can get a referral soon.

 

[braindeaf]

Hiya-

Chemotherapy can result in long term nerve and connective tissue issues. Particularly if you received treatment while your body was still growing and maturing.
~F

I regularly see an oncologist for followup in LA. With the chemotherapy I received, It's possible to develop a neuropathy, but when I asked my oncologist about it, he said that I would've developed it while I was on treatment or shortly after, not 11 years later (I was 17 when I was diagnosed).

But maybe I can run it by him again and see if there's something else. I appreciate the response!

 

[lgelb]

I don't see ALS in your picture at all. Has fibro been ruled out? When we start talking about vitamins and the like, you really need a good internist who can work you up holistically, as opposed to the rheumie who focuses on rheum stuff. Nutrition, stress, sleep and exercise are also all more important to you than someone else average your age.

I agree w/ Fiona about considering a survivors' group because there is an overall health component to this beyond whatever your current pain may relate to.

Best,
Laurie

 

[braindeaf]

I don't see ALS in your picture at all. Has fibro been ruled out?
Laurie

Is there some reason why you say it's not in my picture "at all"? From my understanding, initial ALS symptoms include muscle weakness and muscle spasms. I am weak in general, but I feel weaker on one side than the other for specific things (like my right hand is weaker than my left, my left foot is weaker than my right, etc). I am having muscle spasms for at least 70% of my waking day. I'm not necessarily disagreeing with you, I'm just confused why you say it's "not in my picture at all."

Also, I started going to the gym recently and I'm finding that I'm getting some really strange muscle soreness I've never had before. Muscle soreness is normal from working out, BUT I have it in weird places I'm not used to. I have muscle soreness in my left big toe for instance. So when I walk, my left foot hurts to lift up AND my left big toe hurts when I lift my foot up. Do you think this is a sign of profound muscle weakness? I've never had my toe muscle feel sore before.

Does ALS muscle weakness feel like a soreness, like the muscle is broken down, or is it simply a weakness with no soreness feeling at all?

As for fibro, I haven't discussed it with my doctors yet, but I do know that it is way more likely to have fibro if you're a woman than a man (I'm a man). Also, I know that with fibro, there are many tender points on the body that hurt when pressed, and I don't really hurt at all when pressing them.

About the survivorship clinic, I used to go to one, but it shut down. Maybe there's another one in LA I can get plugged into--I'll look.

Thank you so much for the reply!

 

[Nikki J]

Please read the sticky for this section. Initial ALS weakness is not painful or sore. It is not a feeling it is failure of a muscle to work. Nor is it diffuse in the beginning as you describe. My sister's first symptom hand did not work to button a shirt. My ankle suddenly gave way.

Re likelihood of fibromyalgia vs ALS, fibro is indeed more common in women but the chances of you having fibro are statistically much higher than those of you, a 28 yo man without a history of familial ALS ( believe me, you would know) having ALS. It is very rare in your age group

 

[braindeaf]

Thanks so much for your reply. This thread has given me some confidence. It gives me strength to hear from you all who are affected by this disease. I cannot imagine what that's like, but when I was 17 years old I was diagnosed with a rare bone cancer called Ewing's Sarcoma. I had a tumor the size of a grapefruit inside my sacrum. I think a lot of my health anxiety comes from that. Ewing's Sarcoma is much rarer than ALS (200-300 diagnosed each year in the US), so when I hear statistics of the rarity of some disease, it doesn't really make me feel better.

I will update this thread if I find a resolution so it can help anyone with similar symptoms.

 

[Blessed1]

I have psoriatic arthritis, at times my feet, hands and at some point about any other joint in my body hurts. Sometimes I have swelling other times just redness or pain at the joints. The pain issues do sound like my experience with arthritis. It doesn't show up in blood work like RA does.
I use prescribed nsaids and it keeps it under control. I have no idea about your spasms though.
I have to use an ergonomic keyboard and mouse to use a computer comfortably.

 

[braindeaf]

Thanks for the reply. I met with my rheumatologist two days ago. She says she doesn't think I have any kind of arthritis, but she put in a referral to get an EMG done and to see a neurologist. She thinks the most likely explanation is peripheral neuropathy caused by one of my chemo drugs called Vincristine. It is known to cause peripheral nervous system damage.

Lately I have been feeling weakness--not clinical, profound weakness, but I find it harder to do certain things like washing the dishes for example. I had to take 3 breaks while doing the dishes because my hands felt weak and would start shaking. My shoulders and arms have been feeling weaker. I can still use them, but they feel weak, it's hard to describe.

I've been getting more tingling/numbness, and more muscle spasms, despite my anxiety level coming down a bit. I am thinking at the moment that I have chemically induced peripheral neuropathy, but I'll know more next month after doing the EMG and meeting with the neurologist.

 

[Atsugi]

Sorry to hear it might be peripheral neuropathy those can be painful. But they're not ALS.

Very glad she's looking at PN. ALS is not a peripheral neuropathy.

You didn't read the sticky, did you? All of that last post is addressed. Not ALS.

 

[braindeaf]

I have read the sticky. I know that sensory symptoms are not related to ALS. I know that pain is typically not related to ALS. PN affects the sensory, motor, and autonomic nerves. I am having both sensory and motor symptoms. Motor nerve damage mimics symptoms of ALS, so it is related. I do not know if I have PN yet, it is just a speculation until I get the EMG.

I think that I probably do not have ALS, but I don't know for sure. The reason I'm updating this post is to help other people who come to this site anxious about ALS who may have symptoms that mimic it like motor neuropathy.