Good morning/afternoon. I am new to this group but not new to forums. I really enjoy meeting new people through forums. Not so much in person in that I am a dyed in the wool introvert. I write way better than I talk.

I have just found out some either very disturbing or very wonderful things about my brain MRI last week. This is the culmination of 3 years of going from doctor to doctor and being blown off by most of them.

I'll reveal more later about me and my challenges as I go on. Don't want to make my first post a novel.

In short, I am 53 and recently disabled. I have been out of work for a year and a half and just received my SSDI this month on the first go around. I used an Disability Attorney as I knew I would never be able to fill out all the forms myself.

I have stiffness in my lower back, rigidity in my legs and feet. I can still walk but use a cane or a walker for bigger errands. Because I am low vision, I do not drive but use public transportation for even bigger trips. I am fortunate because I have Trader Joes and Food4Less across the street and down a block from me.

Neurologically, I have low focus, concentration problems and memory issues. This ramped up 2 years ago when it is thought that I may have had a small stroke on the left side of my brain so my right leg and foot is affected causing drop foot.

At that time, I had a brain MRI done. The Neurologist who ordered the scan was less than satisfactory and just sort of blew off the reading even though he kept saying.....under his breath, with my husband and I in the room..."there's no frontal lobe. Frontal lobe is missing." He suggested that I see a "Mental Health Professional" and then dismissed me. What??????

The next Neurologist I said basically latched on to my health sheet that I had filled out that it was thought that I had a mild case of Cerebral Palsy. Once she saw that, no tests were done and she just dismissed me with...."well, you have CP. Just live with it. No, I will not support a Disability Claim because if I do, you'll just lay around the house all day and become unproductive."

3rd guy was a little more helpful but in the end, because the muscle relaxer he had me on and the PT he had ordered (3rd time around for me) wasn't producing, he dismissed me with "I can do nothing further for you." Because he had started testing me for MS....at my insistence...he did give me a referral to the MS specialist of my choice. I had my appointment armed with the mysterious "missing frontal lobe" MRI.

FINALLY! Someone competent who gives a hoot! After looking at the MRI, he remarked to me, "Did you know you are a walking miracle?" Blank stare from me. "Your MRI shows that you have pieces missing from your brain, including much of your frontal lobe!" SHOCK!!

We talked and he explained that, most likely, I had a stroke in the womb and my brain did not fully develop but because the brain in a wonderful thing, it managed to rewire itself and do a "work around". That's why I have been high functioning up 'til now and have worked secularly for the past 34 years.

He is also testing me for a rare condition called SPS-Stiff Person Syndrome. He ordered a sleep study as well. I meet back with him in 2 months to get the results of the bloodwork that may confirm SPS or show other autoimmune problems. I feel very satisfied with this doctor and feel that I'm finally going to get the answers I need, though not necessarily want.

Yep. A novel in my first post. Hope to make friends and learn more about things here. I don't know how to post a picture. I have a copy that I shot with my IPAD of my MRI. It shows a lot of solid white gaps which is where I'm missing brain matter. It's pretty fascinating.

Hello Valleydachs,

It's very good to have you join us.

Welcome to the NeuroTalk Support Groups.

I'm glad to read that you have finally found a doctor who is helping you find those answers after so long. You truly are amazing for all you have achieved.

You've probably found the search feature by now but I'll repost it below. FYI there are many posts across various forums from members here regarding Stiff Person Syndrome. http://neurotalk.psychcentral.com/search.php

I'm sorry that words on a screen can not really show how moved I was to read your story.

I'm sure you'll find support and information from the members here and all the best to you.

Hi Valleydachs

Welcome to NT and thank you for sharing your story - and what an amazing story! You are an inspiration. I'm so glad for you that you finally found a doctor/neurologist that was willing to investigate thoroughly and more importantly share his findings with you. So many here never get that so hang on to him for as long as you can.

I hope you find more answers browsing the forums and look forward to seeing you around here.

Hi Valleydachs

Welcome to NeuroTalk . As you will have seen from the other responses it is a very knowledgeable and supportive community.

One thing that you wrote struck me; "you have CP". By CP do you mean Cerebral Palsy - I ask this because you also wrote "I had a stroke in the womb and my brain did not fully develop"?

My apologies if I have this wrong but (here I am depending on my partner, who was the boss psychologist of a CP agency for many years), it might be an idea if you found a local CP agency - a good one will be able to help adults with CP.

All the best.

Hello and welcome, happy to see you have come to be with us, it a great place to be. As you can see we have a great number and caring fellow members here, where you have find a supportive and relaxing place. Have fun looking into the different forums. Our shoulders are here for support in many ways.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Thank you everyone for the warm welcome!
Kiwi, at this point, about the Cerebral Palsy, I am guessing at this point. My parents never ever looked into it. I was an uncoordinated child and now adult. Mom did stretching exercises and the only thing I was ever told was that I had a hip out of its socket. I also wore braces that help my feet apart when I was very young. CP is a thing I discerned later as an adult. But now after seeing this new specialist and his explanation of a stroke in the womb early on, maybe it isn't CP after all. Or the stroke and lack of oxygen to my brain caused a slight case of CP. I'm sure I'll learn more as I go along. I have slight spasticity in my feet and legs mainly. While my hands work pretty well, I have problems with my fingers working and they will double joint up on me at times so that I have to, with my other hand, un-joint(not a word, I'm sure) them.

I look forward to reading more here and meeting more people.