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Confused

Posted Mar 26 2010 5:55am
I will admit that I am often confused. As of late, it doesn't take much to confuse me. So here we go....

I finally finished the nasty steroids last week. Nearly 7 weeks !! It's no wonder that I fell apart. Yes, I said it had nothing to do with the steroids, and yes, now that I am done with them, I am feeling better. But, there are still some problems, but things are definitely better. I am not ready to kill anyone that wanders unwittingly into my path, and I am not crying at every little thing. I still have my emotional spells, but not as bad.

I have been experiencing some pretty extreme vertigo problems though. I finally called my primary care doctor just because he will get right back to me where the MS Center will keep me on hold forever (seriously like 30-60 minutes) then I will be lucky to get an answer or a call back unless I schedule an appointment and drive the hour to get there. Anyway, PCP said that he puts people with vertigo on hydroxyzine hcl on that it won't interfere with any of my other meds, and to take it as needed. It's hard to tell if it's helping because some of the episodes last forever, or so it seems, hours really. And some only last minutes or even seconds. So I take the hydroxyzine, but I don't know if it is helping or if it was just a short episode.

Yesterday was my MRI appointment then follow up with a new to me visit with a neurologist (Dr. S.) at the MS center. This neurologist has been there for quite some time and comes highly recommended and is a chair of the center. Off I go to the MRI first which went off without a hitch. It was in a new facility and I was treated almost like royalty. The staff was wondeful and very supportive. I am not claustrophobic, so the MRI's are not traumatic for me. I have an initial breathing issue when first going into the tube, which takes me just a minute to control, then I'm fine. I asked the technician to just let me get situated, then not to talk to me unless necessary so I can fall asleep. That's the best way for me to get through the visit. All went very well.

Next, I went to the MS Center, which is just a 5 minute drive away, and is part of the same organization, so the MRI results were on the computer for the neurologist to look at. The Center is part of a large teaching hospital, so there are residents there. When I arrived, I was informed that I would be seeing one of the new residents, and that after seeing him, Dr. S would stop in briefly. Dr. M was the new resident. He quickly (too quickly Brian and I thought) went thru the new scans and compared the brain scans with the last ones which were from Jan 09. The brain scans looked great and there seemed to be no new lesions (YAY!) and no active lesions. However, there is a small suspicious area in my brain stem that needs to be looked at more closely when the radiologist does his full evaluation in the next few days. However this is where my confusion comes in. When looking at my spinal scans, my spine is full of lesions. :( The last time I had my spine MRI was July 08 and there was only one lesion that was 2-3 cm. I did not press the resident about the spine because by now it was 5:30 pm, my appointment was 3pm, and I needed to get my kids picked up. The resident kept saying everything looked great and the disease seems to be coming mainly from my spine because the lesions in my brain are all small ones. He said none of the lesions in my spine were active and that there "were no new lesions", however, my spine is FULL of lesions and I don't remember it being like that!!! He also did not bring up the spine scans from 2008. Finally, Dr. S. came in and briefly looked things over and talked with us. He is going to have the scans fully evaluated. He did not say whether or not they were going to call me with the final results but you can bet your behinds that I will be calling in a few days. I know that nothing can be done about the spine lesions, but I am one of those "need to know" people.

I talked with the resident about the vertigo and he said he doesn't think it is related to ms? He did some thing where he had me sit on a table then brought my body back really fast and he and Dr. S. watched my eyes looking for nystagmus (eyes moving quickly) to see if the vertigo is related to an inner ear problem. Negative. They also disagree with me taking hydrozyzine for the vertigo, but want me to wait a few weeks to see if it improves. Dr. M. thinks the vertigo is not really vertigo but more of an anxiety/panic issue. I disagree, but whatever. I agree that I have some anxiety issues, but not that much and not very often. I also told him that I often have a problem where I feel like my arms and legs "disappear". This happens often, sometimes during the day but mostly at night. He acted like I was crazy and that he had never heard of it before. It is called "proprioceptive dysfunction". I'm not stupid. I know what it is, and I've been experiencing it for over a year. I just had never mentioned it to them before that I could remember and wanted them to know for my record. Maybe I should send him information on it.

For now I am to continue with Rebif and I go in April for lab testing--liver, B12, Vit D levels and a few other things that I can't recall right now. My next appointment at the MS center is in 6 months unless a problem arises.

I did like Dr. S and I hope I get to see him in the future. I am going to request him and ask to not be seen by a resident. I understand that they are there to learn, but I also don't want to go there and have to be the one to teach them!! There is only one problem with Dr. S. and that is that he has Cerebral Palsy and he is VERY difficult to understand. But I was told by one of the staff that if I ever can't make out what he is saying, they will have another staff member come in and help out with translation.

Brian and I talked about it all last night when we got home. He agreed that he saw things on the MRI scan that concerned him (like the spine full of lesions that weren't there before) but the resident seemed to just pass by, so for now we will wait until I can get the final results.
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