Andrea1653

Hi Andrea. I have similar symptoms. Any improvement?

I just had another emg done. Not many changes in that department. Now they really don't know what's going on with me they are just calling it motor neuron disease. I enrolled in the answer ALS study so hopefully something will come of that. Been having new issues which I am going to go to a urologist for. I've been in limbo going on 3 yrs now, I may never get any clarity. Take care and keep your head up as high as you can.

Glad your getting some answers, please keep me posted with what you find out. Hope all is well.

Glad your getting some answers, please keep me posted with what you find out. Hope all is well.

A leg mri is unusual in an ALS workup- brain and spinal are what I have had as did my sister and everyone who has reported that I have read. I hope this means they saw something odd that will send you in a different direction. It is hard to wait but December 12 will be here soon.

Nikki, thank you. You are always so kind. It is very frightening, but at this point, I just want answers, whatever they might be. He did not tell me anything other than he found nerve damage in my foot and leg. I understood all of the terms he was using to describe what he was seeing to the medical student other than when he was showing him that the “waves were high”. I don’t know what that means. He wants to MRI my leg to look at the nerves, which I don’t understand. I’ve had a full spine MRI and an MRI of my foot/ankle, which were both clean, in regards to the nerves. Because of issues with my insurance, I don’t have my MRI for 3 weeks and then my follow up with him isn’t until December 12th. I am grateful that steps are finally being made to figure out what is wrong with me, but the process is exhausting.

I am sorry. This must be very frightening. Are you having an mri of the leg or the back? I hope you get more information quickly. It is very hard that he spoke to the student without explaining fully to you after

Post 2: He had a medical student with him, and was explaining what he was finding. I kept hearing this weird noise, which he told the medical student was a “PSW” (which I heard that noise many times), then he mentioned that “this is a CRD”, “this is increased insertional activity”, “this is high”. I was too shocked to ask any of the questions I wanted to ask once he was done, but he said I have nerve damage in the leg/foot I have atrophy and weakness in. He wants to MRI this leg, not sure why though because I have already had an mri of my foot and my nerves were fine. My EMG a year ago showed no nerve damage so this is scaring the living sh*t out of me. Will update once I know more.

Post 1: I do not wish to post on the forum as I do not feel welcome there. I will update my condition from now on through my visitor messages, because I know what it’s like to want to know what someone’s outcome was, who did not come back with their prognosis. So anyone who wants to follow my story can come here to follow my diagnosis process, whatever I might have. I had my EMG on Thursday. He only performed the EMG on my left leg, as that is the leg that I have the most symptoms in, though I have tons of issues elsewhere, which I didn’t tell him about in my exam with him a week ago because I didn’t want to take up too much of his time or sound crazy. The emg done by him (being a neuromuscular specialist at a university hospital) versus the first one I had from a regular neuro was a completely different experience! It was so much more thorough and honestly, so much more painful.

Sorry to hear things didn't go well for you. My experience was quite different. I only seen Dr. Kolb at my first appt. and after he listened to my story and did his exam he came right out with he believed I had a motor neuron disease. Mind you I was seeing a Dr. prior to this that pretty much dismissed everything I was telling him. Don't give up, no one knows yourself better than you. You say you have atrophy and weakness. Are you having trouble walking or any other problems that accompany this?

No problem, glad I could help. Update me and let me know how things go.

For the most part my experience there has been pretty good. I have had 4 visits so far, all with Dr.Kolb, and one for the emg with another dr. They are thorough and explain things very well. Just remember this is a teaching hospital so you might see a soon to be neurologist along with your appointed one. Sorry you are having to see this type of Dr. Hope all is well.

Hi Andrea, I encourage you to share BFS resources where everyone can read them. And, as you are not well-known to our people as a medical authority, it would be best to share any advice you have out in the open so other people can see it. If you'd like to open a thread in the DIHALS area with BFS Resources at the title, it might be well received.

I'm making a bullshit Facebook account now if you could send the link or at least the name I'd be extremely grateful for your help