Brain Lesions

Hi everyone,

My daughter started experiencing severe headaches about two years ago. We took her for CT's and MRI's which indicated she had some large masses of something on her brain. Doctors ruled out tumors and decided the large spots were brain lesions caused by inflammation. Our doctors tried to call the lesions several different conditions or things but through test all these were ruled out. I'm talking about things like ADEM, Sarcoidsis, MS, fungus along with many other things were ruled out.

We have had her in and out of the hospital for the last two years almost and are currently seeing a team of doctors at the Duke University Medical Research Center at Duke University in North Carolina. Recently her immune system hit rock bottom but she still has the brain lesions which cause her severe headaches. They did diagnose Immune condition and are saying she has CVID (Common Variable Immunnodeficiency). If this holds true my daughter will need antibody infusions for the remainder of her life. However, her doctors still do not have any explanation for the brain lesions and cannot at this point prescribe any treatment other than an anti inflammatory drug which has been steroids up to this point.

I am looking for anyone who might have any knowledge of any individual who may have had brain lesions caused by possibly an Autoimmune disorder and had an impossible time getting rid of them or getting them under control. Please let me hear from your

Desperate!!!!!!! and thanks for any input.

By hoganshome
Posted November 21, 2008 at 9:34 am
Report post

Hi I have an auto-immune disease called SLE & a secondary auto-immune called Sjogrens , i was diagnosed 2yrs ago ..after a series of chronic debilitating headaches , dizzy spells , brain fog symptons , nausea etc i had a first brain scan (mri) last April(2007) & then 2nd in Oct (2007) brain lesions were diagnosed & an area which they are not sure if it's a mass or a larger inflammation area ..
Both conditions can cause brain lesions the condition is called Cerebral Vasculitis...if i can be of any other help please let me know...

By judynmax
Posted November 22, 2008 at 7:18 am
Report post

Hi,
I don't know if this will be of any help but I read your post because my son had a brain lesion and it took a while to determine the cause. He had a kidney transplant in June (some years ago). At the end of that August we noticed he had developed nystagmus (rapid, chaotic eye movements). They quickly discovered the lesion but not the reason. Finally a neurologist at Kennedy Krieger found one other case of this happening in a transplant recipient. It was caused by the immune suppressant drug Prograf. After taking him off the drug the lesion did disappear and the nystagmus improved but did not go away. They said the damage had already been done.
Good luck in your search to discover your culprit. It is doubly hard to deal with these situations when it is your child who is suffering.
Judy

By mikeandecd
Posted November 29, 2008 at 12:10 pm
Report post

I am sorry to hear of your child's brain leisons. Has anyone suggested Erdheim-Chester Disease "ECD" as some suffering with ECD had brain leisons. ECD is very rare and has been found in children as well as adults. ECD is difficult to diagnose as there are no specific consistent symptoms or signs. Some have been diagnosed following discovery of brain leisons, or pain in long bones to name just two. For more information about ECD please visit www.erdheim-chester.org. Good luck.

By sfineman
Posted March 18, 2009 at 7:12 am
Report post

My name is Steve, and I think I have a similar condition to your daughter. I have brain lesions that are undiagnosed and after five surgeries (3 brain, 2 lung) the doctors are still baffled. They know there is an underlying auto-immune process that lead to the lesions, but no nothing other than the fact that the epstein-barr virus is present and should not be. I spent some time at the National Institute of Health and they were just as stumped. Currently, I split time between Dana-Farber Cancer Institute/Brigham and Woman's hospital in Boston, MA and The University of Massachusetts Medical Center in Worcester, MA. Please feel free to contact me via e-mail if you have any other questions. steve.fineman@gmail.com

btw, the last of those headaches I got was about a year ago, and I was hospitalized for a week because new lesions had formed. I am a college student, and this has been going on for five years. Not easy.

By nornd
Posted March 20, 2009 at 3:27 pm
Report post

Hi BWR I don't know how old your daughter is, but has anyone thought of testing her for toxoplasmosis antibodies. The disease is mostly found in newborns who have acquired it in utero, but can also cause problems such as brain lesions in older children and adults. Just a thought.

By bubbitt
Posted July 3, 2009 at 5:57 pm
Report post

Hello there ,sorry to hear of your daughter's plight.
Just a thought, have you considered the possibility of the lesions being toxoplasma lesions?

By SickOfBeingSick
Posted July 4, 2009 at 10:54 pm
Report post

Hi,

I also have severe headaches and neurological problems, purpura and CVID. I was diagnosed with Malloret's Meningitis, an auto-immune meningitis. However, I don't think this is the answer in my case, because the steroids that should help tremendously with Malloret's don't help me at all with these symptoms.

The only steroid that has had any impact at all is beclomethasone, and it only produces very mild, temporary relief. Unfortunately, beclomethasone is only available in QVAR asthma inhalers, nasal sprays and by IV, not in tablet form. Beclomethasone crosses the blood-brain barrier at a much higher rate than most other steroids (Arya, et al., 2005, Brain Permeability of Inhaled Corticosteroids, Journal of Pharmacy and Pharmacology).

The spinal taps I have had showed increased protein but nothing was cultured, possibly because I am always on high-dose antibiotics because of the CVID.

However, EVERY time I have received IV antibiotics, without fail, I have shown drastic improvement with this so-called auto-immune meningitis. So in my case, I am wondering if the cultures weren't accurate because of the antibiotics or if my brain is experiencing some kind of toxic effect from endotoxins from the numerous chronic bacterial infections I have throughout my body from the CVID. My symptoms seem very similar to AIDS encephalopathy, but I have tested negative for AIDS more than once.

CVID is a Primary Immune Deficiency. There are about 150 different forms of Primary Immune Deficiencies. Some Primary Immune Deficiencies are associated with neurological problems like Ataxia Telangiectasia.

Has she had a Lyme's titre? Lyme's disease can also infect the brain.

IVIG infusions help both infections and auto-immune problems so these infusions may help her greatly. Just telling you my story to maybe give you more ideas to work with. Best wishes to you and your daughter in obtaining the treatment she needs.

Cathy

Welcome to Inspire!

Explore topics in this journal entry and replies:

7 replies

Add to the discussion

You