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Neurology Report
Posted: Thursday, October 31, 2013 10:18 PM
Joined: 12/5/2011
Posts: 127

Well today I saw my Neurologist for a follow up and report on the neuro-psych exam I took a month or so ago and this is his findings. First a little background so you will understand. When I was in my early 20's, my first husband got me into using cocaine. For him it was just a social thing but for me it became about a 6 to 8 month long habit that was very costly monetarily  as well as eventual nosebleeds and gasps for air. With his help and a brief period of withdrawals I was able to stop. Now here we are 25 + years later with lesions in the right frontal lobe of the brain and a "possible" diagnosis of Pick's disease. That has not been completely ruled out but is still being considered. The other consideration is what is called cocaine associated vasculitis which can mimic Picks' disease. He said there is a test on the horizon that is about 2 years away from being approved by the FDA that is currently being done in Kansas City, Mo. that can hopefully determine if the dementia is either Alzheimer's or Pick's disease. So far it appears to be a success in diagnosing the 2 dementia's. He said when and if it is approved at that time he will have me do that. By the way, it is a simple but painful Spinal Tap procedure. He also gave me the SLUMS test which is the Saint Louis University Mental Test (suppose to be more accurate the basic MMSE) out of a score of 30, I scored a 15, which indicates mild to moderate dementia. So, I still have the diagnosis of dementia as it is clearly indicated in all my tests along with the clinical findings, just not a definite name. He told me because of that I still qualified to be associated with the Alzheimer's Association. He said I needed them as much as they needed me, so to continue on. He also told me that whether it was a slow progressive Pick's or a Vasculitis, I was going to continue to progress, there is no reversal or cure. In the meantime he did feel comfortable with me driving to the store, post office and church on the back roads, no highway driving. He said he would leave me on the honor system with this at hand. He also said that if there were any concerns in regards to driving or issues he would reassess as needed. My son was with me and heard all of this, so he will stay on top of things I am sure as he drove us home this evening. He also told me to continue with my meds especially the Namenda as it is actually used for individuals with Vasculitis. He also added baby aspirin as a blood thinner as I have had several TIA's over the last couple of years and said I may continue to do so and not even be aware unless it was severe. He said if there were any changes to let him know. So, after it is all said and done nothing is really changing except for the driving, I still a form of dementia and still currently being treated as a Pick's patient.


Posted: Thursday, October 31, 2013 10:24 PM
Joined: 12/6/2011
Posts: 3326

Tracy, it's great that you've received this additional information and that you have a neurologist who is working on your behalf.
Posted: Friday, November 1, 2013 12:07 AM
Joined: 4/24/2013
Posts: 52


I'm glad that you received more information. I'm sorry to hear that it wasn't better news. I think that most of us, in the back of our minds, still hope they will say we really aren't as bad as we think. But reading all the messages and seeing people who normally would be worse, seem like they are staying stable because of all the support is really encouraging.


So much of your stuff is similar to mine. I used some cocaine, but loads of methamphetamine from 1967-1971. I shot it up and took huge quantities. Reading your post tells me I need to make sure the neurologist knows about that. I also had a head injury as a kid. I was 12 yrs old and riding in the back of my dad's pick-up truck. I feel off as we went around a corner onto my head. I had amnesia for somewhere between 4--6 hrs. I've always wondered about that since my parents didn't take me to the hospital or anything. I was a kid who told a lot of "fibs" and so I didn't even tell my mom about the amnesia until I was in my 40s. I knew she would have thought I was making it up and I wouldn't have blamed her. Now with all the talk about concussions it's really got me thinking.

Take care,


Paul Hornback
Posted: Friday, November 1, 2013 10:32 AM
Joined: 8/9/2013
Posts: 584

Tracy, glad you got more definitive information from the Neurologist visit. Sorry it wasn't news that you were improving. I'm over joyed you can still drive even though it is only in the local and familiar areas. That is probably best though for your safety and the safety of others. I know that being able to drive was pretty important to you.


Hang in there and keep doing all the great things you are doing for yourself. I know you will continue to encourage and support everyone on the message boards. I look forward to all your posts.

God Bless, Paul


Iris L.
Posted: Friday, November 1, 2013 12:00 PM
Joined: 12/15/2011
Posts: 18715

That's good news, Tracy.  You seem to be status quo.  Keep it up.  I'm glad your neurologist seems so knowledgeable.

Iris L.