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stumbler
1 year ago

@asurf777 , here’s some details about CSF Leaks:-

https://medlineplus.gov/ency/article/001068.htm

The quoted causes are either surgery or a Lumber Puncture, the latter being one of the tests for MS.


lilbird
1 year ago

Thankfully not @asurf777 it sounds dreadful, why do you ask?


quantummechanic
1 year ago

Thank goodness someone else has posted this.

This is what I’m sure caused the case I have, because I felt it happen, an I’ll never forget it. I’ve been trying to get that message across to the doctors and nurses since day one, because to me it’s been clear as day. I don’t want the initial cause to get lost in among the symptoms.

Does anyone happen to know if there’s a test/scan that can prove you had a csf leak or a blood brain barrier breach?


asurf777
1 year ago

I was wondering because it’s something they are looking at. My mother is a “leaker” and sometimes weak duras can be genetic. I felt a pop on the trampoline when all this started…they are sending me to both an MS specialist and an ENT.

The 18th and 19th- so I’ll fill you all in.

As far as tests I know an upright MRI can be helpful, and the tilt test.


quantummechanic
1 year ago

Thanks for the tests information, I can pass this on. I too felt a pop, and everything kicked off after that. From my point of view, the chain of events have been so logical, one leading to the next, I’ve tried hard to explain to the nurses what it was I experienced, in the order I experienced it. I actually felt it weakening in the run up to it giving way. My thyroid swelled after it happened as well, which makes sense to me, immune reaction.


asurf777
1 year ago

^thank you for sharing that. I’ve yet to hear anyone else who had a pop (but then again, still pretty new to this).

I got my official dx on the 19th.

Do you think it is possible that the impact or “pop” could have been a catalyst for onset.. ( or maybe, as you mentioned,the immunoresponse?)

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