Desperately seeking help from anyone

HI everyone,

I apologize in advance if this topic is a repeat...and for the length. For those who have been diagnosed with brain aneurysms, were you ever misdiagnosed or was it difficult to find your aneurysm? I am desperately searching for answers regarding my mother, because the Drs. just cannot seem to be bothered with the possibility that they are wrong. But, I can't just sit idly by and watch my mother suffer the way that no person should ever have to suffer.

The Drs. ultimately diagnosed her with, of all things, fibromayalgia about two weeks ago, but also admit that the diagnosis does not entirely explain what she has been going through:

A few months ago, my mom was taken to the emergency room after describing the worst headache she had ever experienced in her life. She had difficulties with her perception, could not touch her fingers to her nose, her speech was off, she could not concentrate, and couldn't even sit up without feeling like she was about to throw up or pass out. At first, they thought for sure she had a stroke, but her MRI and CT scans came back normal. After meeting with specialist after specialist, they determined she had a TIA (mini-stroke), gave her some meds, and sent her on her way.

After she was released, she started to experience extreme fatigue, to the point that she could sleep for 20 hours straight and still be exhausted. Even today, her weekends are spent sleeping. A few weeks after her release, the worst headache of her life happened again, along with all of the symptoms. This time, they weren't so sure she was experiencing TIAs. After 4 days of clean MRIs and CTs again, the doctors couldn't agree on a diagnosis so her insurance company refused to pay for additional days. So, she was sent home with more drugs and no answers.

She's been to doctor after doctor and no one can offer her any explanation. She saw a neurologist, but he claimed that she was depressed, despite my mother's insistance that she is far from depressed. So, she stopped going to him. The other doctors pointed her in the direction of an internal medicine doc. Her bloodwork shows that there is definitely something going on in her body and that there is some kind of swelling going on somewhere, they just don't know where. She was also diagnosed with rheumatoid arthritis and spinal stenosis. He chalked the swelling up to fibromayalgia, but we really started to question that because that doesn't explain the neurological symptoms she's been having. He said if we didn't like the diagnosis, he'd give her a referral to the Mayo clinic to begin testing for cancer.

We are just so frustrated at this point. My mother's severe headaches are so bad that she just cannot function. She says that it seems to begin in her neck area, but radiates all through her head. Despite no change in her eating habits, she's lost about 60 pounds from when she was first admitted to the hospital in April of this year (we always joke that it's a good thing she was overweight, otherwise she'd have been nothing by now). She's still sleeping her days away and she finds it almost impossible to get through a day of work because it takes up so much energy just to try and think. She's at the point that she refuses to go to more doctors because they just don't seem to want to listen.

I hadn't even thought of the possibility of a brain aneurysm until today, when I saw that a celebrity had been admitted to the hospital and they checked for an aneurysm. So, I googled 'brain aneurysm' and then, almost instantaneously, my gut instinct just reacted in a way I never knew it could. Searching through these discussion groups and info on aneurysms, my mother's symptoms fit entirely with this. So, I wanted to see if anyone else had a similar experience in terms of misdiagnosis and treatment...


My first reaction when I read this what that it certainly sounds like an aneurysm. I’m surprised that the MRI / CT didn’t reveal anything unless its hidden from view. Did they do a cerebral angiogram? That’s the most conclusive test but typically done to confirm what’s on the MRI / CT in prep for surgery to repair the aneurysm as it’s quite expensive.

Hey Jennifer.
I was sent for an MRI on my head because my mom and sister both have aneurysms but I have to tell you that alot of your mothers problems sound like mine but not as extreme as what it sounds like she has with the headaches. For years (almost 10) no one knew what the problem was and I was also told that I had fibromayalgia, and that I was depressed. I finally found a doctor that would listen to me. She is a very young doctor. Her concern was more that I had gotten from anyone else. In the end she sent me for an MRI on my neck, this was just a month before I was sent for an MRI on my head anyway the results came back that I have degenerative spinal diseases along with two disks that are so worn out that they squeez my nerves along with growths along all of the disks in my neck. Has your mother had a MRI on her neck.
The problem with fibromayalgia is that you don’t swell. I hope that you can find a solution for her. I know what it’s like when no one will listen or believe. Good luck, your mom is luck she has you!

As I read your post before I even read the comments, I had two thoughts. A spinal tap and a cerebral angiogram. I can’t give you a diagnosis but looking at the puzzle I think that these are two tests that you may be missing. Another point I would like to make is who has read your mom’s films. A dear friend of mine had “the worst headache of her life.” She was scanned and told she was fine. However her gut told her something was wrong. She took her films to a friend, who is a neurologist in another state, and he found her aneurysm. He saw what the radiologist had missed. She needed to be clipped and she is doing well. The information above is limited. I am not a doctor. I don’t know why but I am feeling spinal tap and angiogram. Even if the angio is negative for an aneurysm, you can then rule out aneurysm and continue to search for an answer. I hope you find your answer. My heart goes out to your mom. It is awful to be ill and not seem to be able find out what is wrong. In my life dx has not always been easy. Sometimes we have to look for the zebras. I will tell you this with all that I have been through, as hard as the road has been, I have been blessed with my physicians. I can count on one hand the physicians in this world that I trust. I hope you find a doc like this for your mom. Good Luck and God Bless.