My Posts
Mar 06, 2012 in the Rare Diseases Community
Hi. I probably have mitochodrial disease (I'm in the last stages of diagnosis) so I'm researching it and I have some questions about it. I haven't tripped over some of the answers yet and was wondering if the community on here might have some of this information or be able to point me at some. 1. Do 'mito crashes' increase prog...
Mar 05, 2012 in the Multiple Sclerosis Community - 34
Thanks Barb! I have been posting updates in my journal instead of in this thread. Someone recommended doing that, but it seems like no one sees them there, so I'm not sure that is really a good strategy. But, because people were so helpful and involved when I posted here, I thought it might be helpful to others. I have had a tremendous amount of te...
Mar 05, 2012 in the Multiple Sclerosis Community - 34
Hey, I wanted to follow up on this old thread. It looks like I am finally getting a diagnosis. Because my case was so weird, and this thread is where most of the weirdness is captured, I wanted to post the diagnosis here. It looks like it's going to be mitochondrial disease. That is where the energy of the cell doesn't replenish properly when it...
Nov 28, 2011 in the Neurology / Neurosurgery Expert Forum - 1
I have had various intermittant neurological problems for around 20 years across many systems - cognitive (more rare)[word choice, slow speech, logic impairment, short term memory impairment], muscular weakness (common), slow rhythmic tremors (mostly resting), migraine (common), hypersomnia (fairly common), urinary urgency/incontinence (more rare), blurry vis...
Feb 16, 2011 in the Neurology Community
If I stop supplementing with taurine as a test, how long until elevated levels due to supplementation will be exhausted so I can see how my functioning is without supplementation? I'm specifically looking to test functioning of muscles and neurotransmitters. I'm currently drinking 1000 - 3000 mg of taurine a day in energy drinks. Tks! Jen
Jul 02, 2010 in the Migraines & Headaches Community - 1
I recently was treated at an ER for migraine. I failed the heel toe test. Why? What does that mean?
Oct 22, 2009 in the Multiple Sclerosis Community - 85
When I spoke to my neurologist regarding my initial test results (they were not helpful test results), I asked her where to go next? There was a silent pause. I said, I'm still having problems, mobility, cogitive etc, and she said something like.. well, we could look at the cognitive problems. Then I told her about my new eye symptom and she sounded e...
Oct 20, 2009 in the Multiple Sclerosis Community - 12
I had perimenopause symptoms which ended up not being perimenopause, but elevated estrogen levels (perimenopause is diagnosed by your FSH (Follicle Stimulating Hormone)). I was put on testosterone, which reduces estrogen level and all of my symptoms went away (hot flashes, night sweats, insomnia, dizziness, nausea during menses, etc). So, something else to...
Oct 20, 2009 in the Multiple Sclerosis Community - 34
Oh, ok. I'm not real sure about how this place works. Thanks for the suggestion. :-D Jen
Oct 20, 2009 in the Multiple Sclerosis Community - 34
Update - So, today I had a sonogram of the eye. The person who wielded the wand (I think she was a doctor, not sure), said that she is reporting that she considers my eye normal. However, there was a room full of students that she talked to during the exam and she said something about me having big drusen in both eyes and that made it hard for her to find t...