What is a relevant symptom and what is not?

[Artwinged]

I am a 59 year old, caucasian woman. I am awaiting an appointment with an ALS specialist.

Thinking back, I had weakness in my left arm as early as Jan. 2014. In May 2014, I had an event that included dizziness (felt like I was banking to the right all the time) and, after a week, tingling in my left arm and side of face. Doctors decided this was NOT a stroke and MRIs and MRAs did not reveal a cause. Over time, the tingling faded and I was left with just a little weakness in the left hand. First neurologist decided it was a migraine phenomenon.

I began having weakness in my thigh muscles in November of 2014. Over the past year, it has progressed to my buttocks, upper arms and now, I think I'm feeling it in my calves. There are occasional twitches but the most spectacular phenomenon is the spastic contractions of my left thigh if I over exert it. I can no longer step up into my pickup truck, lift things I used to, I'm fatigued all the time. When I am tired, my feet drag on the floor. I wear stabilizing knee braces which seem to help me walk better. Driving long distances is no longer possible. So far, swallowing and speech are unaffected.

However, over the past few weeks, I have been having a sensation I can only describe as sunburn like. It is largely in my upper arms and upper back. It wakes me at night and I can't go back to sleep. There is also some parasthesia in the left side of my face. (No, I'm not having a stroke). During the day, I often feel as if I'm about to start shivering. I don't think this is typical of ALS. Can anyone tell me what it might be so I can ask the doctor?


TESTS:
I have seen three neurologists, had a muscle biopsy and innumerable lab tests. The biopsy (June 2015) showed Type 2 atrophy but no other findings. EMG was performed to rule out miasthenia gravis (I have psoriatic arthritis, another auto-immune disease) By the time they got done shocking me, repeatedly, on my arm, leg and face, I had had it. I allowed them to insert a needle in my thigh twice and then we quit. So, I'll probably have to do that, again. I have also had a lumbar puncture (Oct 2015) which was negative for MS and other diseases. Spinal MRIs are normal but my brain has multiple lesions in the white matter and brain stem. None of the doctors can tell me why.

I'm sorry this is do long, but it's very complicated. Any ideas you can share are greatly appreciated.

 

[Atsugi]

Artwinged, most of your symptoms had nothing to do with ALS, but this weakness in your left leg really needs to be fixed. Could be many things.

None of these is ALS:
Dizziness
tingling
spastic contractions of my left thigh if I over exert it.
fatigued all the time.
sunburn like sensation
shivering

Twitches are common to so many things, they are not diagnostic of anything.

Three neurologists have seen you but not called ALS? Then perhaps they're not seeing ALS.

I'm not a doctor so I won't pretend to know what the problem could be. But I know ALS fairly well, and you're not describing it.

Since you're concerned about ALS, ask about it at your next appointment. But frankly, I don't see any ALS there.

Be sure to read the sticky post stuck to the top of this subforum, titled "New Members. Please Read Before Posting." This will answer most or all of your concerns.

 

[affected]

I don't think this is typical of ALS. Can anyone tell me what it might be so I can ask the doctor?

Thanks for posting so much detail.

Mike has answered the concerns of ALS really well and I agree with him.

I need to note that this forum is not a general health forum, it's only for ALS so we can't speculate on what might be going on.

Good luck working with your doctors. Usually it is best to ask your doctors what they think it might be rather than suggest diagnoses to them. Some things do take some time and patience to diagnose correctly.

 

[Vincent]

The hallmark symptom is weakness. It doesn't feel weak, no numbness, no tingling, no pain. You just have something that does not work. Foot slap, slurring, can't do up buttons. This is a horrible disease. If you have weird sensations you are lucky,you don't belong here.
Vincent

 

[Artwinged]

Thank you all for your quick replies.

While it is comforting to hear that many symptoms are inconsistent with ALS, the weakness continues to increase. And to clarify, it's in both legs and upper arms. If it is not ALS, that's wonderful. But, functionally, I'm declining fast so I hope this next neurologist can tell me what it IS and we can do something about it.

I'll let you know what the doctor says and I won't bug you, beyond that.