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Thoughts Welcome

I just learned how naïve I've been thinking it was so easy to get a diagnosis and move on with my life. I'm still looking for answers if anyone has any thoughts/suggestions they would like to add.

Feb/Mar saw my PCM for TERRIBLE headaches. Just all day, wake you up, medicine doesn't help headaches. Dr. scheduled an MRI of the brain.  The morning of the MRI, I collapsed in the waiting room. I got up from my chair to walk to the bathroom. Felt "funny" and my left leg started wobbling. Lost all strength and then shortly after the right leg lost strength too and I sagged to the floor. Never hit my head. Never lost conscious. After getting help, had my MRI (they added spine to the order). Had my testing and then left. Hospital called me 30 minutes later and told me to go to a stroke center because my findings were "concerning"

Long story short- I've been extensively tested since April for everything they could think of. It looks like a TIA but not, it acts like MS but it's not. My heart is amazing and it's not Lyme, Lupus or all the other things. I was low in Vitamin D, but that's all they could find.

I have a brain lesion in the caudate (egg shaped). It's healing/shrinking, so that's good. But that first month I had ALL kinds of issues with my left leg going wobbly on me randomly. I even bought a cane. I feel weird right before that happens, almost like the blood drains out of my head- which is a warning sign the wobbly leg is going to happen. If I keep walking it's spastic or I lose all strength. It's really fast, within a few minutes, I'm myself again. But then my muscles feel drained for hours afterward.  For one month is was pretty bad with the wobbly leg issues, and the fatigue was pretty severe.

Then it sort of stopped for awhile. Went in for more testing. Saw 2 MS specialists who don't think it's MS. Saw a general neurologist who thinks I need to go to the Mayo Clinic and see a MS/Autoimmune Doctor.

Now I'm anemic out of nowhere (blood was tested in March and that wasn't a problem then). Then my blood pressure started creeping up (never had a problem in my life until last week). The my period started getting weird (ultrasound coming soon). The leg issue started up again for a week and then quieted down again. Intermittently have a day of just exhaustion where my leg feels like I ran a marathon even though I didn't do anything.

I feel like a leaky pipe. Just as we check one thing off the list, something new pops up. So what do you all think? Anything sound familiar? Thank you in advance!
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987762 tn?1671273328
Hi and welcome,

Neurological limbo can be a very long road to travel when the evidence isn't clearly pointing in any specific diagnosible direction. Over time any additional  minor / major medical issues that are experienced or turn up during testing typically help point towards or away from your list of most likely causes but sometimes instead of helping, they only confuse and make getting a single dx even harder and unfortunately neurological limbo stretches on.

From 2020 because the Coronaviruses is a large family of viruses we now have Covid 19 as a possible causation of unexplain neurological issues, along with some common and rare (blood clotting) vaccine side effects to make working out a diagnosis become even more difficult...

What either of the MS neuro's believed it 'might' be after seeing you, is a lot more relevant than the general neuro's opinion of it possibly being MS ie "need to go to the Mayo Clinic and see a MS/Autoimmune Doctor" so if you've already had 2 MS specialising neurologist opinions, and neither believe what's happening is MS related then a neurological condition like MS is going to be much lower on your potential causes list.

Your mega headache is likely a significant clue because it was what sent you to the dr in the first place, so i'd go back to the beginning and look at every test you had then but if nothing was specifically abnormal in your first tests you could be looking at neurological mimics which might not show up in a singular test or an immune deficientcy becomes a more likely or multiple slightly off combined situation eg migraine, TIA, perimenopause/menopause, mental health, slightly abnormal thyroid, post viral, side effect, one of the many types of inflammatory diseases etc etc etc

Hope that helps...JJ
Helpful - 0
9745005 tn?1410044366

Sorry you are struggling and wish I could provide a positive outlook on getting a quick diagnosis, as I've experienced some of your same symptoms ..and then some!  I actually presented the same way initially with the weak legs and collapsing without warning after standing up from a sitting position.  Wondering what your B12 and Ferritin is?  B12 including the MMA test which shows what is available at the cellular level?  Also, Lyme testing is notoriously unreliable and is a great mimic to a lot of conditions..MS being one of them.  That might be something to further consider based on what testing you've received.  What are your neurologist's thoughts on the lesion?  What is your neurological exam like?    Getting a diagnosis of anything unfortunately can be an exhaustive process of ruling things out.   I hope you get answers soon!    
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