I am about 6 weeks after initial symptoms for what I think is a CSF leak. 3 neurologists and 2 ENTS so far. None think it could be a leak because I don't have typical symptoms. They have changed over the weeks. I definitely feel better lying down, and if I take it easy and just get up some, I feel decent. But when I try to go to work, I get head pressure, tingling. Today, for the 3rd time, the tingling, pulling at top of head went down to nose, then lips feeling numb. Eventually it is a tight throat feeling with heavy tongue where I feel like I have to concentrate to not slur some words. While driving home, the pain goes to my neck, shoulders and down arms like a burning pain.
I had a normal MRI 2 weeks after initial symptoms, but I am starting to think that due to the leak now, my brain is sagging and causing this issue that makes me feel speaking is difficult. It isn't noticeable to others, but I can feel like I am not talking correctly.
I am in Chicago area and have had NO luck being taken seriously in regards to a leak. Although I know better, from reading medical articles for the last month talking about the varied symptoms of a CSF leak. But this shoulder, throat, neck pain has me currently terrified of brain sagging. there are SO few success stories regarding repairs of spontaneous leaks, I feel hopeless.
Originally I tried to blame this on TMJ or migraines but now leak seems like the only possible condition.
Now that I am reclining, the jaw tightness, throat pulling is better. Arms and shoulders still burning some.
I don't know what to do anymore. I begged my primary doctor to just admit me for testing, but they won't.
I don't want to die.