the Sun and this darn brain lesion

[NDN]

Dr Joshua,

First, thanks for offering this opportunity through this website. Thanks in advance for taking the time to read and post any insight to my question.

I have a brain lesion that has caused me considerable problems the past 13 years. It is in the left paritaloccipital lobe, 2 mm based on MRI with gad.

Getting the correct diagnosis has not been easy. The last dx was RR MS, but that is now doubted after years of MRI follow ups, plus normal neuro exams and minor symptoms.

Before the MS diagnosis, I was told I had a rare brain disease. 10 years ago I lost all functionality of the left side of my brain and was given oral Cytoxan and oral steroids. After a year of that, I was restored, though needed years of rehab, most of which I had to do at home because of insurance limitations.

Anyway, the docs now suspect it's an AVM or Vasculitis based on MRIs with gadolinium 4 years in a row. Either way, I've been told no one can do anything about it.

Well, I can't help but disagree, though I am not qualified to make any assessments. I believe I need more testing, at least an angiography (or whatever it is called) before I let anyone right me off as incurable. I know vasculitis is hard to diagnose, but I learned the hard way not to go with a diagnosis until the proper testing is complete. Needless to say, this has been so frustrating and I am lost at what to do with my life or what is left of it.

So, after all that I have a question: One of my biggest issues is the sun and weather in general, but the sun is the worst offender. Just a few minutes exposure and that darn lesion feels like it is frying in my brain. I start to feel ill, weak, and the color goes out of my face. It takes me hours, if not days to re coupe from that. No kidding! Have you ever heard of anything like that? If so, any advice?

thanks again! I am so grateful for any advice you have to offer.

NDN

[Dr. Joshua]

Hi NDN, thanks for posting your question.

I have very limited information to work with and no pictures to look at, so I recommend that you follow your own doctors' advice on this matter.

Is it really 2mm and not 2cm? 2mm is a very tiny lesion. If this is the only visible lesion and there has been no change in years, multiple sclerosis seems an unlikely diagnosis. I'm not sure what you mean by losing all functionality of the left brain, and I don't see how such a small lesion could be responsible for that. A single small lesion seems an unlikely finding in vasculitis, and a 2mm lesion is probably not an AVM, either. A 2cm lesion might be an AVM. A cavernous hemangioma is also a possibility. However, if it is indeed 2mm in diameter, it is also possible that it is an incidental finding without any connection to your symptoms.

Heat can worsen the symptoms of multiple sclerosis, but just a few minutes exposure to the sun causing the symptoms you describe is not something I have heard of.

You are correct that if an AVM is suspected, angiography should be considered. However, angiography is not without significant risks, and you should discuss the risk vs potential benefit with your own doctors.

[NDN]

Dr Joshua,

Thank you so much for answering my question.

I realize from your questions something is missing in what I have been told all these years. It's times like this when I wish I had a medical degree!

The lesion is reported as 2mm in size on the MRI report, but like you am beginning to question this.

When I refer to losing all functionality of the left side of my brain I mean I was unable to read, write and comprehend any conversation. Examples: I was unable to discern the difference between a $20 bill and a $5 bill even while staring at the bills. Counting change in my hand was impossible. I'd start with the first coin, go on to the second and by the time I got to the third coin I'd forget how much money I had already counted and would have to start all over again. It was so frustrating, I began to just hand over all my money when at the stores. Thankfully Debit cards took over and I stopped carrying cash.

Information was not 'sticking' at all. It was like I had Alzheimer's and I was in my late 30s.
I couldn't remember anything either. My doc had me come in every two weeks and I'd forget directions to his office from one visit to the next. Conversations were impossible for me to follow. Simple words like "Do Not" confused me. I'd get 'stuck' trying to comprehend the first few words I was hearing and couldn't follow anything after that. My memory problems were so bad I had to stop driving for one full year because I was beginning to have minor traffic accidents, not to mention driving my car into the wall of our house causing major damage to the structure. I just forgot I was driving and took my foot off all the pedals.

Something I failed to mention, I had a major surgery 6 months before all this started. It was an Open Nissan. I had 100% damage to my esophagus muscle (really bad GERD) and this was suppose to be the surgery to fix it plus get me off Reglan, which I had been taking for 8 years. Incision was made under my left arm, starting underneath my left breast and ending 3 inches from my spinal cord. All went well, though it was a nasty surgery to start with.

After that, I lost a lot of weight (15 lbs was alot to me because I was skinny in the first place!) and I was unable to eat anything without it causing diarrhea. My life was hectic as I returned to work 6 weeks after the surgery. I left home for work at 6:30 am and didn't come home until 7 pm. I clearly was not in the best of health then and had some bad habits. Eating too late was one of them and not eating the right foods was another.

Thanks again for posting. I will certainly heed your caution on the angiography and will consult my doc. Sometimes less is best.