Hi there. I first posted a year ago, at the beginning of trying to figure out what was going on with my brain. I have now seen a total of four neurologists. The first two were pretty disappointing. The first had thought MS, but when I had no bands in my CSF, he decided it was all migraine related. Yeah. NEXT! Second doctor never even looked at my MRI images, just read radiologist report. I found that weird. She focused on my mental health, I think, told me sometimes we just have to wait until symptoms get bad enough to diagnose MS. I had just had a major car accident that had affected my speech, word finding, and made me a bit tender, too. And by then, I was clear something was up with my brain. So yeah, I cried at some point in her office. And I was getting a divorce. She wanted me to have a psych eval to determine the extent of my memory loss, so she said. I had a bad gut feeling, so I moved on.
Third doc thought that aside from a concussive syndrome, I sounded like an MS person to her. She ordered another MRI, with contrast this time. No major enhancements, but she was still thinking MS. She wanted a spinal xray in space (or something like that), meaning I would be standing when the xray happened, instead of seeing the spine in a static way. I understood where she was coming from, but I was a little afraid of how much radiation that sounded like. That was right about at the end of the year, and by the new year, I couldn't see her anymore (insurance change).
After waiting for a referral on my new plan to see a neurologist, nine months passed. The upshot is that I LOVE this neurologist. She is smart, she listens, and she treats me and my mind with respect. She talks to me as an intelligent collaborator, not a stupid patient.
She ordered yet another MRI with contrast. No clear enhancements or new lesions (forgot to say, I have lesions all over my brain, two in the central pons, where she said they should not be). She was 95% sure MS, but asked me to do another spinal tap to see if any bands showed up. Nope, clear as a bell.
By then I had been reading about MS and also about mimicking diseases. That made me remember some other, less annoying symptoms I have, such as Reynaud's, photosensitivity when spring and summer seasons come, and a rash over my nose and cheeks - sometimes more pronounced than others. I also have some neuropathy in my feet and lower legs....
I tell my dear neuro this, and she says,"well, before you started talking, I was ready to say MS. I consulted with a colleague, and he said 'that is an MS brain.' But the more you talk, the less sure I am. These other symptoms are not MS symptoms, but they are Lupus. And Lupus or something Lupus-like is the only other think that would make your brain look like that (i.e. all the spots/lesions)."
So although she would have been willing, if I really wanted, to stop there and call it MS, she asked if I would be willing to see one more doc, a rheumatologist, to outrule the Lupus possibility.
So so many of my symptoms match what you all deal with, it's not even funny. But then I have these peripheral nervous system symptoms. So I understand why she wonders. Limbo really sucks, but I don't want the wrong diagnosis, don't want to take the serious drugs for nothing...
Here are my questions for you guys.
1. Would I be better off if I end up having lupus - to me they both seem like short straws to draw...by the way doc says the chances of me having both ms and lupus are very small. It would be like being hit by a crater twice. I thought that was funny.
2. Should I push someone to deal with my concussive syndrome too? I understand that everyone wants to deal with my abnormal MRI. But ever since the accident, I have speech issues, especially when I am tired. Sometimes the wrong word altogether comes out. I know it is wrong as soon as it's out there - it's very frustrating, as I have always been articulate. Also sometimes I can't find a word. Or, sometimes I have a bit a slur. All this is worse when I am really tired or stressed. I know from reading that sometimes concussive stuff is so small it doesn't show even on an MRI. My great doc seems to think that the accident just triggered lesions in the area/s in charge of speech and memory, but it's all MS. What do the armchair MD's here think? I never had these problems before the accident. Other MS or Lupus things, but not those.
3. Does Lupus have that remitting quality. I ask because sometimes I clearly am having a worsening of something, and it can go on for weeks it seems, and then it backs off, maybe still present, or maybe some stuff seems to go away.
I may be waiting for a few months to get into a rheumo. There are few of them on my insurance plan. Boo. But in the meantime, my neuro has me lined up to receive Aubagio as soon as we clear the rheumo. hurdle. Do you guys like that medicine?
I am in my forties with a dear daughter to finish raising. I don't want to lose any more of my memories - or anything else - if I can help it. I do feel I am in good hands with this doc. But I can tell that I will still have to be a strong advocate for myself.
I hope I didn't talk too long. I thank anyone who bothers to comment for taking the time.
shakenandstirred.
Third doc thought that aside from a concussive syndrome, I sounded like an MS person to her. She ordered another MRI, with contrast this time. No major enhancements, but she was still thinking MS. She wanted a spinal xray in space (or something like that), meaning I would be standing when the xray happened, instead of seeing the spine in a static way. I understood where she was coming from, but I was a little afraid of how much radiation that sounded like. That was right about at the end of the year, and by the new year, I couldn't see her anymore (insurance change).
After waiting for a referral on my new plan to see a neurologist, nine months passed. The upshot is that I LOVE this neurologist. She is smart, she listens, and she treats me and my mind with respect. She talks to me as an intelligent collaborator, not a stupid patient.
She ordered yet another MRI with contrast. No clear enhancements or new lesions (forgot to say, I have lesions all over my brain, two in the central pons, where she said they should not be). She was 95% sure MS, but asked me to do another spinal tap to see if any bands showed up. Nope, clear as a bell.
By then I had been reading about MS and also about mimicking diseases. That made me remember some other, less annoying symptoms I have, such as Reynaud's, photosensitivity when spring and summer seasons come, and a rash over my nose and cheeks - sometimes more pronounced than others. I also have some neuropathy in my feet and lower legs....
I tell my dear neuro this, and she says,"well, before you started talking, I was ready to say MS. I consulted with a colleague, and he said 'that is an MS brain.' But the more you talk, the less sure I am. These other symptoms are not MS symptoms, but they are Lupus. And Lupus or something Lupus-like is the only other think that would make your brain look like that (i.e. all the spots/lesions)."
So although she would have been willing, if I really wanted, to stop there and call it MS, she asked if I would be willing to see one more doc, a rheumatologist, to outrule the Lupus possibility.
So so many of my symptoms match what you all deal with, it's not even funny. But then I have these peripheral nervous system symptoms. So I understand why she wonders. Limbo really sucks, but I don't want the wrong diagnosis, don't want to take the serious drugs for nothing...
Here are my questions for you guys.
1. Would I be better off if I end up having lupus - to me they both seem like short straws to draw...by the way doc says the chances of me having both ms and lupus are very small. It would be like being hit by a crater twice. I thought that was funny.
2. Should I push someone to deal with my concussive syndrome too? I understand that everyone wants to deal with my abnormal MRI. But ever since the accident, I have speech issues, especially when I am tired. Sometimes the wrong word altogether comes out. I know it is wrong as soon as it's out there - it's very frustrating, as I have always been articulate. Also sometimes I can't find a word. Or, sometimes I have a bit a slur. All this is worse when I am really tired or stressed. I know from reading that sometimes concussive stuff is so small it doesn't show even on an MRI. My great doc seems to think that the accident just triggered lesions in the area/s in charge of speech and memory, but it's all MS. What do the armchair MD's here think? I never had these problems before the accident. Other MS or Lupus things, but not those.
3. Does Lupus have that remitting quality. I ask because sometimes I clearly am having a worsening of something, and it can go on for weeks it seems, and then it backs off, maybe still present, or maybe some stuff seems to go away.
I may be waiting for a few months to get into a rheumo. There are few of them on my insurance plan. Boo. But in the meantime, my neuro has me lined up to receive Aubagio as soon as we clear the rheumo. hurdle. Do you guys like that medicine?
I am in my forties with a dear daughter to finish raising. I don't want to lose any more of my memories - or anything else - if I can help it. I do feel I am in good hands with this doc. But I can tell that I will still have to be a strong advocate for myself.
I hope I didn't talk too long. I thank anyone who bothers to comment for taking the time.
shakenandstirred.
I don't know what the odds are for having both MS and Lupus but approximately 6 years ago my son had a girlfriend who's mother had both Lupus and Multiple Sclerosis.
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