Breann1580 wrote:I realize this is an online forum and you aren't experts, but I feel so frustrated an helpless and I need somewhere to turn. My name is Bree and this my story:
I gave birth to my second son in August 2012 via csection. Immediately after and for approx 2 weeks I had very high BP which was extremely odd for me since I had been and always do run very low. Accompanying the high bp and then lasting for an additional 2 weeks AFTER BP normalized I had a 24:7 headache. All was back to normal by about 4 weeks pp.
At approx 8 weeks pp I got a pretty bad band like headache that lasted about 3 weeks 24:7 and nothing would take it away. No meds, etc. the headache subsided and was replaced by an odd flesh colored rash on only the palms of my hand and soles of my feet. The rash lasted for about a week at which point both completely peeled. At this time, I began to notice a tingling and numbness in my right toe which over about a week progresses to include my whole right side from scalp to toe. I also began to get dizzy. Went I'm for an MRI w/ contrast to discover a very sizable lesion on the left side of my brainstem.
I was sent to a neurooncologist for a full work up. By this time I was very neurologically ill. I had no control of my right side, complete numbness and began to have trouble swallowing. I was admitted and put on solumedrol and underwent testing to include spinal MRI, brain MRI, MRI spec, lp and VEP. ALL were normal except for large lesion on brain MRI.
I had no dx. Went home and symptoms improved dramatically and I felt virtually normal. Went for a follow up MRI at the end of December (after mid nov hospital stay) and the lesion was MUCH smaller but had moved from the left of my brainstem to the center.
This ruled out a tumor. Was brought back again 2 weeks later for another scan. At this point symptoms had worsened but were now on my left side. Scan revealed lesion had again moved but was now on the right and had the appearance of a spider web. Went for a second lp, which was again negative. Doctors were now concerned it was CNS lymphoma bc of its behavior in moving. Also largely on the differential was post infectious demyelination. Was slated for another scan and 3rd LP in another two weeks. LP again normal scan again was worse so they opted for a brain biopsy to rule out cancer.
Biopsy was on the 31 st of jan, 2013. It revealed nothing! But left me very disabled upon waking up. 2 weeks in the hospital in rehab and IVIG treatment. Had a follow up mRI at 1 month post surgery. Everything was gone completely.
I've had 3 scans post op with the most recent in JUne which show no activity and only slight scarring. My next scan is in two weeks. MS is still in the differential although they're saying its only a 20% chance this cIS will go on to be MS. If it does they say its tumefactive bc of presentation.
I have no new symptoms and we are going on almost a year from initial onset. I hate that I've gone thru so much with zero answers except that its not cancer. I'm obsesse with trying to determine if my case is consistent with MS. I'm researching constantly. Please, any insight or opinions about my case would be so greatly appreciated. Thanks for listening.
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