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Confused and Scared... HELP!

Sep 29, 2017 9:14 PM

Sorry it's long but I would appreciate some advice or input or anything really.
I have suffered with migraines for as long as i can remember. My first memory is a head CT. I was recently also diagnosed with fibro and am waiting on my first apointment with a specialist and pain clinic after finally finding a doctor that took me seriously. This situation is about my neurologist.
So I had an MRI Wednesday morning at 8 am, the turn around time for the results is 24 hours. I got a call at noon the same day. I was taking a nap so I missed the call. I called back and the nurse called me again Thursday. She told me "There is a CHANGE in your brain, POSSIBLY caused by migraine but NOT SURE." Um, what! She had no answers to any of my questions. Where is it, what does it effect, how big, will it get bigger, is it permanent, will it go away?
No answers. Just, "I will talk to to the doctor and call you back." 6 hours later got a call saying "I talked to the doctor and it SEEMS it is a result of migraine not a cause." I thought, What is that supposed to mean? Ok so are they causing damage? Whats going on? "Ummm, I'll call you back." Doctor calls, "It's hard to explain over the phone so I will show you at your next appointment, (end of October) but I THINK it is just what a migraine looks like active in the brain."
1st of all can nobody be sure of anything? And 2nd there is something like 8% that can actually be seen this way and I was not having a migraine. What am I supposed to think?
(The capitalization is just my way of punctuating their uncertainty whenever I spoke to them)

Sep 30, 2017 12:20 AM

That is sooo annoying and upsetting:( I'm very sorry they are giving you such a hard time, I would be pulling my hair out after the first call. Could you get a second opinion?

Sep 30, 2017 12:51 AM

This nurologist is a referral from my primary. My husband is epileptic and wants me to go see his. I'm going to call but no telling how long it will take to get in.

Sep 30, 2017 12:46 PM

I have had similar experiences. When my bad migraines started back in 2014, I was diagnosed with Idiopathic Intracranial Hypertension after having an emergency Lumbar Puncture done. But my quality of life has decresed significantly since then.
First the meds I was given will improve the pain slightly but the side effects were gnarly.
Then I started having vision problems.
Also a major decreased on my cognitive and focus.
And also I cant move my head too fast or look down or bend or stand up to quick or bassically I had to limit my physical activity to avoid extreme pain. And that means Ive gained weight.
But doctors cant tell me much and blame everything on my weight.
Im trying a new neuro-opthalmologist, who thinks I was misdiagnosed. Unfortunately, I told him that my left eye tears up when Im physically active, stressed or in pain. He said is a normal reaction. Yea, like who eye starts tearing up when going up the stairs?
I too feel scare...I wish medical personnel cared more and judge less.

Oct 01, 2017 8:45 PM

Im so sorry that is terrifying! Some of the things that you said if brought to light a couple of possible symptoms of mine sometimes whenever I stand up I get dizzy and I know that that's normal for most people but if I move too quickly and anyway I get dizzy to the point that I almost fall over pass out and my ears leak that sounds strange but it's almost as if I have a perforated eardrums and it constantly feels like my ears are dripping I have to have Q-Tips all the time because it drives me crazy I wonder if any of that may be connected I'll have to talk to my nurologist and if I bend over I likely to fall on my face and stairs must be hilarious to watch unless I have a railing to hold onto I must look like a monkey trying to keep my balance but that's mostly because of my feet and my knees lol. Sorry for the long sentence and any misspellings I'm using voice to text

Oct 01, 2017 9:50 PM

I just recently had a MRI on my head because my gynecologist ordered it because of some bloodwork I had. My bloodwork revealed a high level of prolactin so I have a benign tumor on my pituitary gland. I have to have it monitored every year but I haven't had any headaches because of it. I'm praying for you 💜

Oct 01, 2017 9:58 PM

Thank you

Oct 02, 2017 12:32 AM

They need to, have to explain it to you. Can you get an earlier appointment?

The way it was “told” to you was extremely unprofessional! They should have the facts before calling you.

I have migraines also. Had them for many, many years. There is some swelling during a migraine along with a few other “side effects”. The way it sounds is that the migraine caused the swelling not the other way around. (That sometimes makes a difference. Even after the migraine calms down there's still swelling. At the same time, before the onset of a migraine there's swelling.

I'm describing this only from my own experience. As well as what my neurologist has explained to me.

Oct 02, 2017 9:41 AM

Goodness I wish they were professional. Im beginning to think they are abunch of loons. Or are just used to patients that are like well this is what the doctor said, guess we will talk later.

Oct 04, 2017 10:27 PM

May i suggest you go to the imaging center and pick up a copy of the mri and the report. Also, pick up copies of all your medical records. Being female imagine my shock at finding out i have an enlarged prostrate. If you have copies on hand call your ins co and tell them you want to see another doc, and what is their recommendations.

Oct 12, 2017 1:46 AM

I have had Migraines since I was a child. Last year I had an MRI done and it showed 10 lesions on the frontal lobe of my brain (most likely) caused by Migraines. They also found two cyst deep in the center of my brain one located on the right side and the other located on the left. Seems they had been there for years and more than likely we're the results of carbon monoxide poisoning as a child. (Exsaust leak in a car where I slept in the back seat on a long trip) They also found the cause of my balance issue (the reason why I was there to begin with) I had blunt force trauma done to the area of the small brain where our balance is and have damaged it. I have a balance problem where I do not know where my center of gravity is. Couldn't figure out through all those years why I kept walking into things. Now I know.

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