Please help. splenium of corpus callosum diffusion restriction; lesion

Posted by alysakaitlyn @alysakaitlyn, May 3, 2022

I’m 17 years old and have a splenium of corpus callosum diffusion restriction; lesion and my doctors have no clue what it is and what to do. Reaching out for answers from doctors or others it does effect me and I do have other health conditions. I was 97 pounds and now I’m 170 within 3-4 months they checked one thyroid test but it comes back fine but the lipid and metabolic have issues
In the past I tested positive for Ana 1:40 and then Speckled but doctors weren’t concerned in 2019-2020.

I just got out of the hospital at uf health shands childrens hospital 2 times. Alkaline Phosphatase
Your Value
98 IU/L
Standard Range
41 - 82 IU/L
Flag
H
RBC
Your Value
4.08 X10E6/UL
Standard Range
4.10 - 5.10 X10E6/UL
Flag L

Cortisol
Your Value
1.6 MCG/DL
Standard Range
MCG/DL
Reference Range Summary
AM 7.0-23.0 mcg/Dl
PM 2.0-10.0 mcg/Dl

I just want answers they say could be a stroke could be a seizure and now saying second to 2/2 migraine

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Hi @alysakaitlyn, Mayo Clinic Connect is a social network to connect with other patients. Because this is a public forum, I have removed the medical records that you shared that contained identifying information to protect your privacy.

Doctors do not answer questions here. However, you can contact Mayo Clinic to get a second opinion from Mayo experts. I encourage you to do so. Here is more information on how to contact Mayo http://mayocl.in/1mtmR63

I'm not surprised that you are getting different diagnoses. Cytotoxic lesions of the corpus callosum (CLOCCs) represent a collection of disparate conditions including things like stroke, seizures, and more. It sounds like you've been dealing with this for a while. Are you able to go to school?

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@colleenyoung

Hi @alysakaitlyn, Mayo Clinic Connect is a social network to connect with other patients. Because this is a public forum, I have removed the medical records that you shared that contained identifying information to protect your privacy.

Doctors do not answer questions here. However, you can contact Mayo Clinic to get a second opinion from Mayo experts. I encourage you to do so. Here is more information on how to contact Mayo http://mayocl.in/1mtmR63

I'm not surprised that you are getting different diagnoses. Cytotoxic lesions of the corpus callosum (CLOCCs) represent a collection of disparate conditions including things like stroke, seizures, and more. It sounds like you've been dealing with this for a while. Are you able to go to school?

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I had to switch to online school because of the issues I was having with feeling exhausted and tired all the time. Currently I’m not doing school atm because of the way I’ve been feeling, everyone seems to have different opinions on what could cause it uf health children hospital is the one who found the lesion that said it was small and wanted to do another mri on the 5th but then I don’t see the doctor until may 31st. I just left the hospital last night for the second time and I was having the same issues I could barley walk I was having left side weakness and numb and tingling. I always tend to space out until something snaps me out of it, I saw my first neurologist when I was 3 and he diagnosed me with migraines and insomnia. I’ve been on so many medications and none of them seem to work, or they would work and then stop working within 3-7 days. I’ve always had issues with that.
I am now waking up constantly during the night and it’s excessively, I just want awnsers all doctors blow me off because of my age, and don’t listen to me or my parents. Theyhad said the past that I have dystoma and pots. And I don’t get enough blow flow throughout my body, the other day my legs and feet turned completely purple for only standing for 5 mins. When I’m doing something small or resting my pulse is always high and runs In 140-160 but they have never done anything about it and it effects my breathing and it feels like I just ran 100 miles n pounding heart beat they put it as. Sinus tachycardia also. One doctor would say she has a mummer and others wouldn’t. I do have back issues but I see pain management at Nemours but she doesn’t do anything about it except for medications wise. I’m having migraines/ pain in the top back of my head and sometimes it doesn’t feel like a headache or migraine it was just a lot of pain I don’t know how to describe it. They wanted to do a tilt table test but they never got around to it, when they do a echo different parts would not show good so they couldn’t see but on the notes from when I left they put atrial situs solitus
with atrioventricular concordance and
ventriculoarterial concordance. I don’t know what that is. But honestly I’m desperate to find answers I mean
I’m only 17 and someone needs to find out what’s wrong. Strokes and seizures run in my family my dad he has them and I have similar episodes like him.

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