I have had RSD, a complex neurological pain syndrome for many years. This year I was diagnosed with FTD or Picks which is a fatal degenerative brain disease. My husband is involved in caregiver support groups and I attend a weekly chat with a small group of FTD sufferers. FTD has been called rare but researchers are actually finding out it probably isn't rare because they believe a lot of people with the first stages of FTD don't realize they have the disease.
I was lucky that I received a diagnosis. I happened to have some symptoms one day and my hubby took me to the ER and they admitted me to evaluate possible post stroke symptoms. My husband asked the doctor to do an MRI of the brain which was consistant with Picks disease also called FTD. The neurologist there at the hospital told me I probably didn't have FTD because it is rare but suggested I follow up with a different neurologist.
We have been through several years trying to obtain diagnoses for my other illnesses, so my husband decided to take me to Johns Hopkins for an evalutation. I saw a neurologist who specializes in FTD. She did additional testing and informed me I have FTD and probably have had symptoms for five years.
We started doing research and my husband went to the national convention. But, I slowly realized that it is hard to find people like me who realize they are sick, who haven't had a radical change in personality and don't "act out."
Most of the people I meet other than the small group at weekly chats are caregivers who are caring for spouses who have the above symptoms. I do definitely have symptoms. I am apathetic about activities of daily living and my husband has to remind me to do everything in that regard. My head falls to the right side and I don't realize it, I have some aspiration problems and I also have some speech difficulties. Also, I have trouble with anxiety and compulsive thoughts. My doctor has increased my Namenda and it seems to have helped things. I have had a few times which I forgot where I was and I have ongoing nightmares in which I am able to talk and react with wild movement. I also have involuntary movements that are compulsive in nature.
I would not wish this disease on anyone but I have really been trying to find other people who are still able to communicate, reason and connect with other people. I think the problem is that these people like me haven't been diagnosed and they don't get diagnosed until much later when they start having aphasia.
We moved further away from Johns Hopkins to be closer to family but my hubby was laid off so we will be moving back east. I had a bad experience with a physician who does research in FTD whose practice is located in the general area where I live.
He spent most of the time talking about their collection of autopsy slides from patients with FTD. He told me I didn't behave appropriately to have FTD. He has not even looked at my MRI yet and ignored the results I brought from my doctor at Johns Hopkins. I told him I had already received a diagnosis but he preceded to re evaluate me which was a waste of time and also caused a flare up of my RSD. He did suggest by my history that I may have a variant of FTD in which lewey bodies occur but he only based this on history regarding nightmares.
He did not talk about his research activities or suggest any clinical trials or anything. So I am quite disappointed.
We hope to go back to Johns Hopkins or find a clinical trial in the East that I may be able to participate in.
If you or your loved one has FTD, feel free to contact me. I have a blog called Iamdying.net in which I talk about FTD, dying, research, emotional feelings, etc., research and treatments recommended by my doctors for various conditions that I have. Some people on the FTD forum which I participate say it has helped them to read about my experiences suffering with FTD because their loved ones are unable to communicate with them.
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