Tnank you for taking the time to read this. I realize you are a very busy person and am grateful for this service you provide. I am writing because I don’t know what to do from here and need some advice. Please forgive my wordy post.?
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10 years ago I began having neurological issues that were indicative of something serious. The CT scan didn’t reveal any issues for a number of years. AS time went on, I was finally diagnosed with Sjogren’s Syndrome, for lack of a better diagnosis…long story short. I lost all functionality of left sided brain activities and was put on massive doses of steriods then finally oral chemo, which thankfully, helped restore comprehension. 8 years after that, as my neuro issues became chronic, I was diagnosed with RR MS. Finally, there was ONE small lesion on my brain MRI.?
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After being followed for the MS dx, I have learned the lesion is an AVM (based on an MRI with contrast report), 2mm in size, in the left paritialoccipital lobe and was told “no one would touch” me, meaning no surgery by a neurosurgeon who specializes in AVM’s. ?
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There are no other lesions on my brain and no other tests results to prove the MS dx. I also have 4 MS neuros opinions confirming I do not have MS at all and should have not been dx’d with MS in the first place. Needless to say, I have spent every penny I have going to doctors.?
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I’m having a hard time accepting the fact I have to live this way. I’ve been on disability since 1996 and would like to go to college, then back to work. It worries me that history will repeat itself. I’m not the only one who is worried…hence my continued unemployment status! (hint - I live in a small town!) ?
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I can control the head pain by avoiding aspirin and coffee, but I can’t do anything about the pressure in my head when the weather changes. Though, maybe splashing cold water on my head has given me some relief, the jury is still out on that. A majority of the neuro issues I’ve experienced with this ‘thing’ have gone away with time. I look perfectly normal on the outside, plus my neuro exam is normal! ?
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My current issue is a change in my emotions (constant crying) and the inability to sleep. The Constant crying is helped by an antidepressent, as well as getting a good nights sleep. Problem here is I have to keep increasing the dose of my med to keep these issues at bay. ?
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I am seeing a pyschiatrist because this change has me worried. It reminds me of the mood change I experienced weeks before the big trouble started 10 years ago. The psychiatrist has been very helpful, but it seems I will be locked into this pattern for the rest of my life. I am only 47 years old.?
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Any advice is welcome

Dr. Joshua’s Answer

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.

I’m happy that you are seeing a psychiatrist, as it is obvious that this whole thing is putting you under tremendous pressure. I am sure that the constant crying and and inability to sleep is not caused by this tiny MRI finding - but the emotional stress you are experiencing is contributing to the depression you are apparently suffering from. If your neurological symptoms have improved with time, neuro exam is normal, and the MRI finding is of uncertain significance, my recommendation is to focus on your mental health and try to put the MRI finding out of your mind, if your own doctors agree. There are a lot of people out there with findings and illnesses that cannot be treated, but are not life threatening, who are suffering from similar stress due to the feeling of uncertainty. It’s a difficult situation, to be sure, but with time and support, you can learn to live with it and get on with your life.

Good luck!