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halfin · 11-19-2009, 07:18 PM

Hi rhythman -

That's too bad your neuro got sick. I think the next test will be an EMG which should be very informative. The nerve conduction velocity part of the test might shed light on your numbness, and the needle EMG will show if there is motor nerve damage.

ALS is very different for every person, and as you know it is a disease of exclusion. They have to rule other possibilities out and I don't think anyone here can do that. Your sensory issues are not a typical part of ALS, although some percentage of people do have that kind of thing. The bulbar symptoms coming and going is also probably somewhat unusual; ALS symptoms tend to come and not go, unwanted guests.

Weakness of course is the hallmark of the disease, and sometimes, yes, I think it can hit all limbs more or less at the same time, although probably more commonly it starts in one area and spreads. My first symptoms were bulbar, then my hands started feeling weak, and in the past month my legs have started to get stiff and weaker, all within about 6 months. Can still jog a little but I get tired quickly, similar to what you are describing. My joints are getting sore, but mostly my shoulders and hips, pretty much the complement of the set of joints bothering you. Put our good joints together and you'd have a healthy guy.

I guess the bottom line is that your symptoms aren't really typical for ALS, but don't rule it out either. I remember you mentioned you had a history of brief neurological episodes in the past. To me that would suggest MS, but that usually shows up in the MRI. However sometimes it doesn't, I've read. There are also nerve diseases that can affect both sensory and motor nerves, which would seem to line up more with your symptoms. I think the blood tests look for those but again they can't necessarily catch everything.

Sorry to be vague, I think the bottom line is still that you will have to wait for more tests. I know how anxious a time that is, but I hope your symptoms do not become too uncomfortable and that you are still able to get out and enjoy doing what you can.

11-19-2009, 07:18 PM	#2 (permalink)
halfin Member Registered Member Join Date: 2009 City: Santa Barbara State: CA Country: US Diagnosed: 08/2009 Posts: 327	Re: First Tests Okay, But Worsening Symptoms Hi rhythman - That's too bad your neuro got sick. I think the next test will be an EMG which should be very informative. The nerve conduction velocity part of the test might shed light on your numbness, and the needle EMG will show if there is motor nerve damage. ALS is very different for every person, and as you know it is a disease of exclusion. They have to rule other possibilities out and I don't think anyone here can do that. Your sensory issues are not a typical part of ALS, although some percentage of people do have that kind of thing. The bulbar symptoms coming and going is also probably somewhat unusual; ALS symptoms tend to come and not go, unwanted guests. Weakness of course is the hallmark of the disease, and sometimes, yes, I think it can hit all limbs more or less at the same time, although probably more commonly it starts in one area and spreads. My first symptoms were bulbar, then my hands started feeling weak, and in the past month my legs have started to get stiff and weaker, all within about 6 months. Can still jog a little but I get tired quickly, similar to what you are describing. My joints are getting sore, but mostly my shoulders and hips, pretty much the complement of the set of joints bothering you. Put our good joints together and you'd have a healthy guy. I guess the bottom line is that your symptoms aren't really typical for ALS, but don't rule it out either. I remember you mentioned you had a history of brief neurological episodes in the past. To me that would suggest MS, but that usually shows up in the MRI. However sometimes it doesn't, I've read. There are also nerve diseases that can affect both sensory and motor nerves, which would seem to line up more with your symptoms. I think the blood tests look for those but again they can't necessarily catch everything. Sorry to be vague, I think the bottom line is still that you will have to wait for more tests. I know how anxious a time that is, but I hope your symptoms do not become too uncomfortable and that you are still able to get out and enjoy doing what you can.