Has anyone had similar experience?

[terpaul]

I have gone to a neurologist and he has tested me. He did nerve conduction studies and now he has referred me to another neurologist for a second opinion. I could go to UCLA for my second opinion. Would you recommend this?

I started tripping going up stairs about five months ago. I thought that it might just be extra weight but then I started noticing myself thinking about walking with my left foot. Then I started to limp so I went to my primary care physician and he did a spine mri and a brain mri which were both negative. I have started tripping and falling and I am limping all the time now. I feel like I am tense in my back at times and then my limp is worse. My toe next to my big toe seems to carrying more weight now and my big toe seems to not be touching as much. When I walk down stairs I have to hold on to the rail and my motion in both legs is very jerky. I feel a lot of pressure in my thighs when going down stairs. I have zero pain but I do have cramps in my leg when I stretch in the morning.

Is there a test that I could take to test for the heavy metals. I was in the military in 70/71 and I read something about that online. Thanks for your help.

 

[rose]

terpaul,

I'm sorry you're having these problems, I'm sure others can help you with the leg symptoms. I do have leg weakness, some weirdness with two toes, but truly am not the one here on this forum that can help you, as by time I had trouble with my legs I was already aware I had the bulbar palsy, so how I've experienced trouble probably is not the same way most who would have limb onset ALS have.

The test for heavy metals can be ordered by any doctor, it is a 24 hour urine collection. It starts with the first "P" of the day, and (if I remember correctly) you would keep a log of each time you go. It does have to start at the beginning of a day, you can't just pick up the jug and start at a random time on that same day.

When I did it, I went to the hospital where the lab is I use, picked up the container, and a few days later, when it was more convenient, did the collection, brought back the jug the next day and that was it. I do not know if there are blood tests for heavy metals which give as much information as the urine collection method.

Welcome to the forum.

 

[ktmj]

I hope he referred you to a specialist at UCLA, but your symptoms could come from a wide variety of things. Since you are on an ALS forum it is one of your worries. However don't go down that path in your head - what you are experiencing overlaps with other treatable stuff. Hang in there.

 

[AHands]

be patient

it can take a VERY long time to get a diagnosis. meanwhile, do everything you can to strengthen general health, including drinking water, improving diet, getting sunshine, relieving stress.

do the urine analysis for heavy metals. i'm happy to recommend "direct labs" for hair analysis--mine came back all "green" (good), which was disappointing in that it gave me nothing "actionable", but made me feel more confident in their honesty. cost was under $100.

i REALLY like meir schneider's "school for self-healing" in san francisco for therapeutic massage & movement.

IMPORTANT: definitely do all you can to improve breathing. get away from smoke & other air pollutants or lung irritants. if it does turn out to be ALS, the respiratory impacts are extremely debilitating. you want to start with as best breathing as possible.

consider yoga or meditation for breathing and stress relief. stress kills. be patient.