Aa
Does this sound like ALS?
Hello,
I'm a 24 year old male from Canada.
About a year ago I started noticing what I perceived to be a balance problem - my legs felt like they weren't supporting my body weight properly, and I was teetering a bit. So my GP ordered a CT & MRI + blood work --- all came back okay.
About 2 months later, I noticed definite weakness in my right leg, accompanied by fasciculations. Right above the knee, and at the calf. This gradually moved over to the other leg, yet I'm not as weak in the left as in the right. I can support my body weight with the left, yet not properly with the right. The calf muscle is definitely smaller.
Then my right hand began to feel weak, stiff, etc. The right wrist is significantly smaller than the left, and the right elbow looks + feels depleted (it is stiff, weak also...with muscle loss)... it's more difficult for me to pick things up with this hand/arm, or use my grip to full advantage...fascic's at the elbow when muscle is contracted, sometimes sporadically... and at the hand...
I even feel the muscle in my neck is heavy, aches, feels strained almost - it's harder to support my head.
and I've been gagging + even throwing up often - this has been going on for 2 months. the gagging, that is.
all of this in just a year?
does this sound like ALS?
I have an appointment with a Neuro, but it's a month and a half away - and I'm going crazy wondering!
*Also, I've succumbed to many head blows/injuries etc in the past 4 years...
I'm a 24 year old male from Canada.
About a year ago I started noticing what I perceived to be a balance problem - my legs felt like they weren't supporting my body weight properly, and I was teetering a bit. So my GP ordered a CT & MRI + blood work --- all came back okay.
About 2 months later, I noticed definite weakness in my right leg, accompanied by fasciculations. Right above the knee, and at the calf. This gradually moved over to the other leg, yet I'm not as weak in the left as in the right. I can support my body weight with the left, yet not properly with the right. The calf muscle is definitely smaller.
Then my right hand began to feel weak, stiff, etc. The right wrist is significantly smaller than the left, and the right elbow looks + feels depleted (it is stiff, weak also...with muscle loss)... it's more difficult for me to pick things up with this hand/arm, or use my grip to full advantage...fascic's at the elbow when muscle is contracted, sometimes sporadically... and at the hand...
I even feel the muscle in my neck is heavy, aches, feels strained almost - it's harder to support my head.
and I've been gagging + even throwing up often - this has been going on for 2 months. the gagging, that is.
all of this in just a year?
does this sound like ALS?
I have an appointment with a Neuro, but it's a month and a half away - and I'm going crazy wondering!
*Also, I've succumbed to many head blows/injuries etc in the past 4 years...
Well Jules, that information is kind of reassuring. I hope I eventually prove to belong to that particular demographic of MND sufferers. I would like to think that I'll be in a kind-of-stable condition for most of the rest of my 20's, anyway.
But hey, with the way Stem Cell research is going right now (with 1 U.S. human clinical trial in particular - in the process of being approved by the FDA - NeuralStem Inc.), we can anticipate pretty neat things on the horizon. I, for one, do not feel that Stem Cell research is a bunch of hype - especially in the case of diseases of the CNS. While I don't forsee any outright cures in the near future, I do feel that this type of research will establish models for drug discovery, and help expediate the screening process. It will also enable scientists to better understand ALS - why it is caused, how it is caused, etc. and hence edge closer towards a cure.
We need biomarkers for this disease too. Well, what is really needed is a damn cure. But it finally seems like some real interst in this disease has been sparked - probably because nothing really substantial (other than a couple of key genes - and 1 drug, which only extends life by half-a-year/a year at most) has been discovered yet. And it's about damn time!
anyway, I see the Neuro this week. EMG after that. Hopefully at the very least I have PLS, or some other form of MND other than ALS. I'm hoping, praying...
But hey, with the way Stem Cell research is going right now (with 1 U.S. human clinical trial in particular - in the process of being approved by the FDA - NeuralStem Inc.), we can anticipate pretty neat things on the horizon. I, for one, do not feel that Stem Cell research is a bunch of hype - especially in the case of diseases of the CNS. While I don't forsee any outright cures in the near future, I do feel that this type of research will establish models for drug discovery, and help expediate the screening process. It will also enable scientists to better understand ALS - why it is caused, how it is caused, etc. and hence edge closer towards a cure.
We need biomarkers for this disease too. Well, what is really needed is a damn cure. But it finally seems like some real interst in this disease has been sparked - probably because nothing really substantial (other than a couple of key genes - and 1 drug, which only extends life by half-a-year/a year at most) has been discovered yet. And it's about damn time!
anyway, I see the Neuro this week. EMG after that. Hopefully at the very least I have PLS, or some other form of MND other than ALS. I'm hoping, praying...
What did your GP test in the bloodwork? While MS may not show up in an MRI or CT scan of the head in its early stages, it tends to show up in spinal fluid (you'd have to have a spinal tap). The GP should be certain they covered every possible neurodegenerative disease before coming to the conclusion that you have ALS.
They do currently have medication approved for the treatment of ALS, however--Riluzole--which has been shown to slow the progression of the disease. Aside from this, studies are being done with several other drugs, including lithium, but it doesn't look like anything will be approved by the FDA anytime soon.
If do happen to have ALS--and I'd try not to worry about this until you see your neurologist--then here's an interesting piece of information I found that you might like:
"Regardless of the part of the body first affected by the disease, it is usual for muscle weakness and atrophy to spread to other parts of the body as the disease progresses. It is important to remember that some patients with ALS have an arrested course with no progression beyond a certain point despite extensive follow-up. Such a pattern is particularly true for young males with predominant upper limb weakness especially on one side (so-called monomelic or Hirayama type motor neuron disease)."
So there's always the possibility that your symptoms will stop at a certain point and never get any worse--and there's more hope of this happening if you're a young male, as you are.
Hang in there and please let me know how you're doing and what happens!! I'll say a prayer for you (or cross my fingers for you, whichever you prefer).
They do currently have medication approved for the treatment of ALS, however--Riluzole--which has been shown to slow the progression of the disease. Aside from this, studies are being done with several other drugs, including lithium, but it doesn't look like anything will be approved by the FDA anytime soon.
If do happen to have ALS--and I'd try not to worry about this until you see your neurologist--then here's an interesting piece of information I found that you might like:
"Regardless of the part of the body first affected by the disease, it is usual for muscle weakness and atrophy to spread to other parts of the body as the disease progresses. It is important to remember that some patients with ALS have an arrested course with no progression beyond a certain point despite extensive follow-up. Such a pattern is particularly true for young males with predominant upper limb weakness especially on one side (so-called monomelic or Hirayama type motor neuron disease)."
So there's always the possibility that your symptoms will stop at a certain point and never get any worse--and there's more hope of this happening if you're a young male, as you are.
Hang in there and please let me know how you're doing and what happens!! I'll say a prayer for you (or cross my fingers for you, whichever you prefer).
Well it just seems to be progressing faster and faster...
so... and yeah, CT & MRI etc. came back fine - but ALS and other neurodegenerative diseases are diagnosed based on the fact that other tests came back okay - so actually, it's not a good sign. I still have to see the Neuro, then go for an EMG to see what's going on with my muscles.
If I do have ALS, I hope it's a slow progression!
Do you think that any significant treatments are on the horizon? Like in the next 2 years - that might slow progression?
If I have it, I want to live to see 30!
so... and yeah, CT & MRI etc. came back fine - but ALS and other neurodegenerative diseases are diagnosed based on the fact that other tests came back okay - so actually, it's not a good sign. I still have to see the Neuro, then go for an EMG to see what's going on with my muscles.
If I do have ALS, I hope it's a slow progression!
Do you think that any significant treatments are on the horizon? Like in the next 2 years - that might slow progression?
If I have it, I want to live to see 30!
You couldn't get an appointment with a neuro sooner than that? I'd give his/her office a call to see if they can get you on a wait-list in case anyone cancels. The weakening neck muscles is especially concerning because that could be dangerous when you're asleep and really need them to work.
I'm not extremely familiar with ALS, but my dad worked for a company that used to investigate a drug for the management and treatment of ALS...unfortunately, I don't think it was ever approved for clinical trials despite several ALS patients showing a marked improvement. I can't remember why at the moment, but that's what familiarized me with the disease. I certainly hope you don't have it, but it appears that you do have some sort of neurodegenerative disease and should be seeing a neurologist ASAP. Did you get a second opinion on your MRI/CT Scans results? I'd have another radiologist and your neurologist look at it, if possible. It baffles me that nothing showed up in either scan.......(but this could be a really good thing). Were you tested for myasthenia gravis, Wilson's disease, or any other rare neurological diseases?
I'm not extremely familiar with ALS, but my dad worked for a company that used to investigate a drug for the management and treatment of ALS...unfortunately, I don't think it was ever approved for clinical trials despite several ALS patients showing a marked improvement. I can't remember why at the moment, but that's what familiarized me with the disease. I certainly hope you don't have it, but it appears that you do have some sort of neurodegenerative disease and should be seeing a neurologist ASAP. Did you get a second opinion on your MRI/CT Scans results? I'd have another radiologist and your neurologist look at it, if possible. It baffles me that nothing showed up in either scan.......(but this could be a really good thing). Were you tested for myasthenia gravis, Wilson's disease, or any other rare neurological diseases?
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