Hi everyone, my name is Jason and I am a multiple chemical sensitivity (MCS) sufferer. Like anyone who has MCS I have had a hard time convincing anyone (friends, family, doctors) that I am actually sick. Recently I managed to get a SPECT scan of my brain carried out which has given me visible proof that I am actually sick. I thought many of you here would be interested to see the scans so wanted to post this blog.
Just so you understand the scan more clearly- it is the scan and function of 'my' brain overlapping the 'Normal' healthy functioning image of an adult brain. I try to point out the graphing system used on the side with my finger. If my scan was functioning within the normal range there wouldn't be any color deviation away from the color 'gray'. Where it is gray colored is where my brain's functioning (cerebral blood flow) is within the normal range expected. However where it is any other color but gray is where the function of my brain is outside what has been deemed healthy and normal. As you can see what prompted a diagnosis of a 'Neuroimmunological' process is due to the fact that in many places the function and blood flow of my brain is far below average. Showing signs of inflammation possibly caused by a virus, toxic exposure, lack of oxygen, or all the above. I've had varying degrees of difficulty my whole life- but it became disabiling after I got a bad virus in 2002. I'm on disability now. My ability to handle certain foods, chemicals, fumes, pollution, etc., is extremely low now.
Apologies for the poor image quality (they were done with a camera phone) but here are the images of my scans:
1. The SPECT Images
2. Findings - 'Probable Diffuse Neuronal Injury/Dysfunction'
3. Recommendations
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written by MissyG, January 31, 2009
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written by Liberty, February 05, 2009
if you don't mind, I'd like to know how you got this test? did you have to pay for it yourself and, if so, do you mind sharing the cost?
I also wondered if the test itself caused any reactions for you and whether any injections or drugs were involved.
thanks so much and thank you for sharing it!
I, too, would love to hear what they recommend as treatment
Liberty
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written by JeffT, April 18, 2009
would you be willing to share where you had the exam performed? i am after one myself and have found no one who knows how to read/interpret the findings let along do the scan.
i noticed on the report it said: "neuroimmunology screening recomended." where did they suggest you go???????
thanks,
jeff
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written by javan999, April 18, 2009
But there is more to it than you think...
Actually I read the book titled "Change your Brain change your life." by Dr. Amen... that is where I first learned about SPECT scans.
Then I came across later on two places that are not a part of Dr. Amen's clinics, but I personally see greater validity in.
WWW.BrainMatters.com which last I knew has two locations in America, one in Denver, Colorado, and the other in southern California. They might have more locations I'm not sure...
I went to the one in southern California. It was actually part of UCLA, and they explained that the clinicians do blind evaluations of the scans to try to be more objective.
First I didn't need a doctor's referral to get the scan done. I had no idea I had MCS or anything- all I knew was I felt horrible and maybe had Chronic Fatigue.
They do the scans- two of them, one at baseline not concentrating, and the other concentrating.
The total cost is about $3,500 last I knew- but they might take insurance also... in my case I had no insurance so a great friend ended up covering the costs as he could see how I was suffering for years on end.
They gave me the results, they give you a binder with all the scans and information.
They suggested possibly seeing a guy in southern california whom specialized in Neuroimmune illnesses. There are VERY, VERY few in the United States. I waited a YEAR to get into him, and never did... I lived in southern california, but I ended up flying out to Texas and seeing a doctor named Dr. Bruce Russell... the other doctor in southern california is Dr. Goldberg... www.neuroimmunedr.com
HOWEVER I want to point out they didn't realize specialize in MCS- just immune brain and immune mediated illnesses. Such as Autism.
They suggest finding out things you are allergic to- and in the long process I began to realize that it was cleaning products, laundry soap, exhaust, etc. that made me feel ill.
I mentioned it to my doctor- he wasn't opposed to the idea, but didn't fully embrace it. However he had read Dr. Martin Pall's book, "Explaining unexplained illnesses."
Now that it has been some time and he has seen me continual explain how I feel when I'm around solvents, chemicals, etc.... and away from them. I believe he believes me much more now.
Before they weren't sure if my illness was caused by a virus, bacteria. Problem was, I became really ill with a virus infection and never got well.... HOWEVER my job at the time was also cleaning a school with all sorts of cleaning products, day in, and day out. So it is hard to tell what caused it
Initially they did blood tests and checked for active infections all over the board.... and nothing came out TOO extreme... they did put me on valtrex for over a year as well as some antifungals, and even some antibiotics. I can't say that they helped too much.
On top of that then my appendix ruptured, and was ruptured for about two days!!! Believe it or not the doctors couldn't figure out what was wrong with me!!! So I got very ill... almost died, went into septic shock... THEN had complications and had three abcess infections in my abdomen that they had to insert a metal tube into and drain one with a catheter for two weeks, and put me on heavy antibiotics.
So sorry for the long story...
You don't need doctor's referral.
Look into Brain Matters online.
Insurance 'might' cover some- maybe not.
Based upon findings they might give you some suggestions and possibly suggest a specialist that might be able to help you.
I suggest contacting Dr. Bruce Russell in Texas- he does phone consults after the first meeting. The number is 361-749-1930... You can say that Jason Firkins referred you to him.
Hope that helps-
Jason
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written by jeffT, April 23, 2009
i have a very unusual neuro-immune disorder that has vexed experts all over the country. all of them have told me: "go to a neuroimmunologist" but i have never been able to find one until now so thank you for sharing your story and leads on physicians.
do you know dr. goldbert's first name? looks like quite a few in s. california.
thank you again. best wishes and good health.
jeff
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written by sophia, June 01, 2009
Last week Dr Aen was on PBS. It was the first time I learned of him and was impressed w/ his knowledge. On his website, he indicates that he reviews SPECT scans for $400.00. I think htis can be done by sendin ghim th esca, ie vs going in person, but he specifies exactly how th escna has to be taken.
Anyhow on the show he was saying how he uses the scan to determine which supplements and possible medication to give someone in order to help balance the brain/ and brain function. Just thought I would mention this. Wishing you good health.
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written by Dalia, June 18, 2009
Thanks so much for sharing. Brain Matters was recently purchased by CereScan and here is their website: http://www.cerescanimaging.com/
With hope for healing,
Jen
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written by Dalia, June 20, 2009
Best. Otherwise you may just be getting a nice expensive slideshow of your brain.
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Jason get rid of those toxins and heavy metals - some of us just get over loaded with them due the condition of our bodies.
Google 'deficiencies in Glutathione' (and Carnisine) in regards to illness and heavy metal toxitiy - you will be amazed.
I have helped many people with these issues by using Energy patches and YAGE (Glutathione) - sometimes people get relief quickly and for others it takes longer. I wish I could attach testimonials on here written by people who we have helped with the patches. Perhaps I can send them to who ever is interested, or leave an email address on here so's you can contact me. Cheers