White Matter

[NoLights]

I had an MRI about 4 years ago which showed bilateral periventicular white matter hyperintensities...and since then I've been disabled by chronic migraines (atypical and very frequent), and fibromyalgia. I am not able to be around people for very long or leave home because of overstimulation of my senses which makes me sick...especially light and noise. I can't multitask. I had an HMO in California that gave me terrible care. Put me on adderal for stress and took 2 years to diagnose the migraines. Moving to Colorado has been a blessing and the care is much better. QUESTION: Should a person periodically have another MRI to see if there are changes in the brain? I've learned that If I don't advocate for myself...noone will.  

[crazyjayne777]

It is really getting ridicious how our dr. Wont listen to us, what is our country coming too.  well I am trying to inquire about my son, as he has been in  an out of hosp in yhe last few months, but he is having ringing in the ears, hand tremors really bad, passing out n a bunch of other stuff an someone said he might have white matter, as they had tne same sympthoms, do you know anything about white matter.   well we live in CA n my son has no ins. So no one really seems to give a crap about him, he just the othe day after 3 yrs got msi, ridicious  so if yoj can help please let me know,  I hope you are donig better n will keep u in my prayers. So how are your migranes.  I delt with them for years n I  have total empathy for you
GOD BLESS

[anon07072023]

I live in Colorado Springs.  I work with geographic information systems (GIS).  My medical insurance is good (Cigna) - it's just finding a good neurologist & radiologist here that has been a challenge for me.  

The 1st neuro that I went to, takes 7 months to get in to see him & 3-4 months to see his PA. He never seemed to have any time when you did see him & he never listened.  

The radiologists are constantly missing numerous lesions on my MRIs - every single time.  

The next neuro was good - he gave me my MS diagnosis, but he turned out to be very careless in his reports in my medical records. He constantly had the wrong information in there (wrong sides of my body, wrong symptoms, wrong dates, etc, etc).  He either didn't like me or got tired of me correcting my records, so he called me one day on my cell phone and told me that he was really busy with clinics and that I should find another neuro.

My new neuro doesn't really listen to me all that well either. And she's old school - she only uses the MRI hard films and doesn't know how to use the CDs/DVDs that they send.  Last time I tried to give her the CD she told me there are over 100+ images on it and there's no way she's going to review it. But often-times you can see lesions on there much easier than on the hard films.  

I'm glad that you are doing better here.

Good luck with everything,
Kelly  

[NoLights]

Thanks Kelly....And where are you in Colorado? I live in Fort Collins and have had so much better care here than I had in California with Kaiser there. I have Rocky Mt. Healthcare and Medicare now. Helps a bunch since I am on such a low income. I used to be a systems analyst and now it's hard to remember how to spell it! Ha! You have to have a sense of humor. I love to cook and love to travel when I can afford it and feel well enough. I've developed ways of celebrating life and living well on very little. I have no friends. I am so isolated that since moving here meeting people has been hard. My daughter homeschools her 6 kids so she is busy although thoughtful and visits when she can and calls me. Right now I've begun decorating my little condo just because it takes me time and it makes me feel so good being surrounded by pretty things. My ex-husband was so verbally abusive to me for years and years that I love having peace and the freedom to make a home for myself without fear. God has blessed me even though I am sick so much of the time. I am greatful that I have so little pain compared to so many other people in this world. Happy Thanksgiving!

[anon07072023]

I know you can get white matter hyperintensities from chronic headaches & migraines. I'm not sure if they typically present around the periventricular area though.  The periventricular area is a hot spot for MS type of lesions.

You probably should go see a neuro, now that you're here in CO, to see if they'll refer you for an MRI.

Take care,
Kelly  

[NoLights]

Well when I had the MRI the first neurologist said I would just have to live with headaches...gave me no diagnosis or meds. She said I had anxiety. It took perserverence and more doctors all the while I was getting sicker and sicker before I saw another neurologist who knew right away what was wrong with me.  I'm living in another state now and 4 years later I wonder if getting another MRI is necessary. I mean...do things change and if so how fast?

[anon07072023]

Do they think your white matter hyperintensities are only related to your chronic migraines or are you leaning towards MS?

Getting another MRI can't hurt, unless you can't afford to get one with your current insurance.  If they'll pay for another one, then why not, right?

Good luck to you,
Kelly