My Brain is so confused now
 

Hi! And I thought I was so "spesssshul". 2 weeks ago I went to my 4th Neurologist who is a well known MS doctor in Southern CA. When he saw my MRI, he proclaimed that I was missing parts of my brain and that the white large spaces meant there was NOTHING there, not even liquid. He went on to show me how I was missing much of my frontal lobe. He called me a walking miracle because I have, up until recently, been very independent and worked an 8-5 job until last year when I was suddenly experiencing confusion, memory loss and a strange gait. I do have a slight case of CP but this was even weirder than my normal gait. My balance is toast. I'm thinking about graduating from a walker to a scooter. So after telling me that I truly had part of my brain missing, he tested me for Stiff Persons Syndrome. All the tests came back negative with the exception of elevated autoimmune stuff. So I've shown quite a few people, including my Disability group here on FB a copy of my MRI.

Today I got a message from one of our group members. She is not a doctor but she looked at my MRI and stated that it looked more like massive space between my venticles and that the brain doesn't just have "space" but that if there's large white areas, this indicates CSF.

Now this has cast doubts on this good doctor that was so willing to listen to me, not be uppity and told me what he honestly believed and reassured me that he would keep digging for a diagnosis for me.

I wish I could show this picture here. Maybe someone could affirm what he's saying or what my friend is saying.

My symptoms: NO headaches, balance issues. stiffness in my lower back and weakening legs, memory and focus/concentration problems, 50% hearing loss due to tinnitus.

I have been from doctor to doctor who, up until THIS doctor, blew me off. I don't know who to believe but you can bet when I go back for a follow up in Oct, I will be questioning his thoughts that I am missing parts of my brain. The reason that I am high functioning is, he said, because the brain rewired and did a work around after the stroke I had in the womb, causing my brain to develop properly.

Your thoughts please?

Can you call the hydrocephalus association to find a doc in your area to give you a second opinion? Because bad gait and confusion/memory issues are part of the triad of symptoms for NPH - normal pressure hydrocephalus (3rd common symptom is incontinence).

I don't trust neurologists to read radiology reports properly much less interpret imaging. I trust our neurosurgeon. There's still a lot to interpret that surgeons can get wrong but they know way more, all the ones I've met are imaging experts and either have PhDs in some imaging or are radiology adjunct profs.

If you have NPH, there a way to know by having a lumbar puncture where they remove fluid, your symptoms improve and they put in a shunt, huge improvement in quality of life. If you have some obstruction in your ventricles causing csf problems, you need to get to the right doc, asap. You can also have an ophthalmologist check your optic nerve, papilledema or signs of swelling/pressure might be there, if untreated your sight could be damaged. That's quick way to look for csf high pressure but not sure that's conclusive for your situation.

See hydroassoc.org

I have to agree with Pogo with seeing your doc ASAP. I say this because I didn't and things got progressively worse and worse and by the time I did see a dr they needed to operate immediately, emergency surgery.
BUT, in the intervening time I did see an ophthalmologist. They told me there was no indication of raised pressure present and suggested that my symptoms may be caused by scar tissue within the brain from past surgeries. The neurosurgeon was highly critical of the diagnosis of scar tissue. Upon the scan being ordered by the surgeon and performed an issue was seen hence the need for further surgery.

Best of luck with it all
Merl