NeuroTalk Support Groups - Anyone with similar acute onset and chronic course?

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- - Anyone with similar acute onset and chronic course? (https://www.neurotalk.org/peripheral-neuropathy/71507-similar-acute-onset-chronic-course.html)

Quote:

Originally Posted by chamade (Post 450177)

I have a lipoma in the brain corpus callosum, of all places, as discovered on the MRI. The neuro doesn't seem to think anything of it. Yet, can't the body sometimes produce antibodies to fight "cancers" that also affect the nerves? It is called paraneoplastic syndrome and I wonder if it could be related to that.

If you didd the all blood tests recomnded - it won't be paraneoplastic syndrom. Lipoma is not "cancer".

Since when do you have your NP symptoms (I don't remember - sorry)?

Hi chamade, small world...:)

I saw a private neurologist in Castro Valley at first, but I wanted a second opinion, so I went to my primary doctor and asked about a referral to UCSF, but he said they didn't take my insurance. He then said he would like me to see someone at Stanford and gave me a referral, but it's taking forever for them to call and set it up. I am suppose to wait for them to call me and I am about ready to call my doctor back and ask him whats going on. Do you like UCSF?

My lower MRI wasn't that bad, but I have had a lot of back problems and pain. I need to get a full MRI on my mid back and neck.

Can you tell me what is the CPMC?

Quote:

Originally Posted by chamade (Post 450179)

I have cervical scoliosis which could explain my body wide symptoms. Also, it all started after I overdid it with swimming and exercises and I wonder if I tweaked my cervical spine somehow - yet they don't see abnormalities on the MRI.

I see that you're from the SF area too! What doctors did you see for your problems so far?

First I went to the UCSF, now I am seeing someone at the CPMC and just today made an appointment to see someone else at the UCSF again.

Quote:

Originally Posted by Hope15 (Post 450220)

AMIT: It started suddenly in march, 2007.

Hope: The CPMC is the California Pacific Medical Center in Pacific Heights. They have a neuro there who specializes in inflammatory peripheral neuropathies and is a big shot (wrote CIDP treatment guidelines etc.). So far I haven't had much luck with him because no test is showing anything. Next I will ask him to do a skin biopsy - he seemed resistant about it last time. This neuro (Dr. Katz) also works at the Stanford hospital, so you might run into him.
I would recommend going to the CPMC if you can, because they run tests the same day, at least they did for me (MRI and EMG/NCV).

Last I saw the UCSF neuro was a year ago and they suspected small fiber neuropathy, but wanted to do a lumbar puncture. I chickened out and never went to the follow up appointment, which was a mistake in retrospect. I guess I was just hoping the neuropathy would go away, as it seemed to be lessening at the time.
When I have my next UCSF appointment I will have them do the puncture if they still think it's necessary and whatever other tests they want to do.

Stay in touch, maybe we help each other if either of us finds something out about the diagnosis, since our problems are so similar.
Good luck with Stanford, let us know how it goes.

Thanks chamade, best of luck to you too, and yes, lets definitely stay connected. I think exchanging information can most certainly help each other. I will also keep the CPMC in mind....

Quote:

Originally Posted by chamade (Post 450223)