Is this consistent with ALS

[taratune]

My brother keeps talking about a tight lump in his back that causes his "back to go out". Not really painful but sends weird feelings up and down his body. This can sometimes be painful but only when real intense. He thinks it is a pinched nerve. I am wondering if this may be related to his ALS dx or if it is something else?

He reports he can not sit for very long....and says that he feels better if he walks around a little. He thinks that this means that he has something other than ALS.......I was hoping some of you could shed some light on this symptom.

We will find out more when he sees the ALS specialist on Thursday. My brother thinks that his trouble sitting means that he could not possibly have ALS.

Thanks so much for any insight you can offer.

Tara

[crystalkk]

tara,

Good luck on Thursday.
What were the results of your brothers biopsy?

[taratune]

I am not sure what the biopsy showed....but the neurologist referred my brother to the ALS clinic right after he got the results. He said that if it wasn't ALS it was "something close to it". I'm not sure what he may be referring to by "close to it". So I guess I'm wondering if the "feeling better" if he walks around a little is more like something "close to it" ............. and if so What?

We should learn more at the ALS clinic visit this Thursday....but.....from the reading that I have done I'm thinking that the diagnosis may still be up in the air.
Thanks for any insight you can share. Also.....are there any questions that we should be sure to ask?

Thanks,
Tara

[taratune]

Well my brother saw the ALS doc at the La Jolla clinic and he thinks it is ALS too. My brother has been referred to another ALS clinic in Hillcrest....(still UCSD) where they have a team of health care providers that monitor the patients. Is anyone familiar with the services that this clinic offers?

They ran some more tests to rule out heavy metals, Lyme and HEX A deficiency also but we don't have the results yet.

Apparently the biopsy showed that the muscles and the nerves are being impacted. Is this typical for ALS or does it sound like something else?

Thanks for help in understanding all this.

Tara