"Thanks so much guys for your support and balanced advice. Jackie....i think i may do exactly that. I have an appointment with my neurologist and I am going to just see where things go with him. I found an LLMD through the Ilads email add..."
MandyMS29's Profile
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About Me: Female, 39, Scottsdale, AZ, member since Apr 2012
I am 29 years old, and until recently I have been very healthy. Now I have several neuro issues and a fairly complex case.
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In the past six months, I have spent a total of 8 weeks in the hospital, had ten MRIs, two lumbar punctures, three rounds of IV solumedrol, and five days of plasmapheresis. My primary neurologist is with the Barrow Institute of Neurology, and though my case is confusing, he definitely cares.
I have a 38mm lesion in my head, oligoclonal bands in my CSF, and I have a host of other unexplained symptoms. As of right now I have a working diagnosis of MS, but there are a few factors that complicate the diagnosis. Not only is my single lesion large for MS (38mm) but it has also been enhancing with contrast for more than six months. Doctors don't know what to make of this, and a biopsy may be in my future, to ensure that we have not missed the diagnosis.
Solumedrol and plasmapheresis have not improved my symptoms, and they have not affected my MRI results. I have MRIs every month to be sure nothing life threatening is happening, and to monitor the persistent enhancement.
I have spent a great deal of time researching everything related to MRIs, neurology, MS, whatever I can think of that will help me understand this better. But I still come up without answers to many questions (like why did my oligoclonal band count change from one LP to the next, why is my lesion so big, and why is it still enhancing after six months) and I am looking forward to learning from other MS patients and experts.
Thanks to everyone for their input!
Mandy [Less]
In the past six months, I have spent a total of 8 weeks in the hospital, had ten MRIs, two lumbar punctures, three rounds of IV solumedrol, and five days of plasmapheresis. My primary neurologist is with the Barrow Institute of Neurology, and though my case is confusing, he definitely cares.
I have a 38mm lesion in my head, oligoclonal bands in my CSF, and I have a host of other unexplained symptoms. As of right now I have a working diagnosis of MS, but there are a few factors that complicate the diagnosis. Not only is my single lesion large for MS (38mm) but it has also been enhancing with contrast for more than six months. Doctors don't know what to make of this, and a biopsy may be in my future, to ensure that we have not missed the diagnosis.
Solumedrol and plasmapheresis have not improved my symptoms, and they have not affected my MRI results. I have MRIs every month to be sure nothing life threatening is happening, and to monitor the persistent enhancement.
I have spent a great deal of time researching everything related to MRIs, neurology, MS, whatever I can think of that will help me understand this better. But I still come up without answers to many questions (like why did my oligoclonal band count change from one LP to the next, why is my lesion so big, and why is it still enhancing after six months) and I am looking forward to learning from other MS patients and experts.
Thanks to everyone for their input!
Mandy [Less]
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Apr 25, 2012
"Jacki, thank you for finding the info of that guy from AZ! I will message him and see if he found an LLMD and where. That is very helpful!
As for the urgency...i won't know until my neurologist talks to the neurosurgeon and reviews my..."
Apr 24, 2012
"Thanks everyone for your well wishes and support today!
The neurosurgeon says its definitely a suspicious lesion. He says every time he looks at it (he's been in the loop since January), he's tempted to biopsy it. But he said we stil..."
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04/12
I'm an MSer and saw your post on our forum. Just wanted you to know I'm sending well wishes. I'm glad you're seeing the best doctors and hope to hear soon that they've figured out how to get you back on track. Hugs, Jane
04/12
Welcome to our MS community! I hope you will share more of your journey with MS here and find this a good place to visit often.
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