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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


I finally went to neuro. will never go back to her. She was very cold, and had asked how I had been feeling. I told her I was still getting the pains in back of head, and she asked if I had been taking the Neurontin 600 mg she had prescribed. I told her No, I wanted to wait to go over the MRI results, she got REALLY nasty and said regardless I want to get rid of the pain dont I? I asked her what the white spots were and she absolutely nothing in a very nasty nasty tone. SHe was only concerned with me taking my medicine so she can increase it. I got snappy back and asked her if my MRI is normal except for swelling in the cerebellum area (incidental), than why am I almost getting knocked off my feet with these excruciating pains in my head? She said," I dont know, could be a nerve, are you going to take the medicine?" "Call me in 2 weeks so I can increase the Neurontin to 1200mg." Yeah RIght!!!!!!!!!!!! I am seeking a competent neuro and not one that is only going to push drugs and mask the problem, meanwhile I feel worse and worse. MY energy level is just about at empty, pains in my legs, legs feet and hands cold numb and tingly, and brain fog almost all the time. By the way Im 39 sometimes I feel 93. :angel:
[QUOTE=californiasunflower]Gemi--How are you doing?

I wasn't aware you had some imaging to reveal a lesion. Is that lesion on your thoracic spine (What is T2 uptake?) Is this why you've been having the swallowing problems?[/QUOTE]

I've had a good amt of testing. Had an insurance change before full neuro w/u she wanted to do a tap was getting somewhere. She gave me meds and told me I'm not telling you you have ms after she gave me the script (before her, did not know about ms, but she gave me meds that people with ms take), the eye doc said on script to ro plaques. I did not know what that was either. Long story. That was the brain mri that showed that showed up in between the facial weaknesses when the twitching and eye pain started.

The T2 is how it enhanced, it's a gadolineum/contrast enhancing lesion. Thats a long story. Had ct confirmed and suggested mra/mrv (had) to ro it being a vessel or vein. They were trying to figure out exactly what it was. One doc said a facial nerve tumor another told him it was not a facial nerve tumor but that it was a schwannoma of a cervical root. The latest mri (different xray place) had white left and right. Did not show that way last time-hard to get answers. They did different spin echo suppression techniques. The neuroent said come back if you have problems. Well, which problems, breathing? palsy? Anyhow...

The neuro called me back yesterday and talked about the medication dosage and more neuro testing the rheumy wanted done (her letter). He said he will do nerve conduction testing and emg, but that for a dx suggested I go to NYC columbia. Cal, I dread the running involved in this. I will see what the testing shows and go back to the rheumy. She is the one who wants the neuro thing figured out so will go shlep back to her to see what I should do. I want it figured out if they can but won't go to just anyone but need guidance. Went to the city once for second opinion on tumor (another long story) he did dictate gbs but did not do labs or put the scans up. I was not happy about that and got a parking ticket to boot. Anyway, the neuro asked for these reports so I'll bring in when I go for the needle pricking session.

I have not had a thoracic spine imaging. I don't think I complain enough. The swallowing trouble and breathing issue is newer. I don't know why yet. I compensate by changing the mechanics, tilting chin down, small bites, well chewed slow intensional swallowing-it all helps. I try to avoid crusty breads or chewy meat, those things are harder to swallow, sit there several passes till it goes down. I deal with it. Read a little on it and found people with swallowing troubles do some pt and change mechanics, so have done what I can...

I have emg/nerve conduction studies scheduled in a couple weeks. I don't know what that's going to tell but hopefully that the medicine I'm taking will prevent worse types of weakness from happening that involves the upper body. I can handle things that affect the legs, arms, even the face but not the neck or thoracic stuff. It's been distressing. I'm on my own for a few days now and am a little nervous about it, I hope I don't have problems while alone...Thanks, Gemiroo





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