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My Diagnosis 4 - Final Diagnosis and Summary

Diagnosis Roller Coaster -Final Diagnosis and Summary

My next couple doctor visits were routine. About all they accomplished was to get prescriptions for Lexapro and Ritalin, and to have both of my doctors get all of the information needed. In some cases I hand delivered test results between the 2 doctor’s offices. I wanted to make sure everyone was on the same page. Several weeks passed.

It has been 12 weeks, almost to the day since my last day at work on February 12. My FMLA leave was over on Monday May 10th. That is the day I was supposed to return to work. I had appointments to see my family doctor on Thursday May 6, and my Neurologist on Friday May 7.

The visit to my family doctor was very low-key as expected. I went by myself. We discussed the medications I was taking. It was suggested that I do continue with the Ritalin if I thought it was having even a minor beneficial effect. My family doctor had the final report from the Psychoneurologist, and had obviously read it. His opinion was that the diagnosis of BVFTD was a good fit to my symptoms. We discussed my disability, and he wrote me a note stating I should not return to work until August since we were not sure exactly what my HR department needed from me. He said we would make another appointment to complete any disability forms for insurance that I might need. Other than the Hypothyroidism, Diabetes, and BVFTD, I was healthy. We both got a good chuckle over the old joke, “So! Other than that, Mrs. Lincoln... How did you like the play?”

I tried without success to contact my HR department at work 3 times on Thursday afternoon. There was no answer, so I left a message or two.

Just as I pulled in to my Neurologist’s office on Friday
, my phone rang. It was the HR department from work calling to see if I would be returning to work on Monday. I told them that it was unlikely, and asked exactly what they needed from me. All I needed was to have my doctor FAX a note stating I would not return. I got in for my appointment right on time.

Though my Neurologist had seen a copy of the preliminary report on a previous visit, he now had the final report from the Psychoneurologist. He had obviously studied it in detail. He complimented them on the thoroughness of the testing and the report. He was in total agreement with their diagnosis of BVFTD, and said it was what he had suspected all along. I had done a lot of additional research on the subject, and had to agree that the diagnosis was a good fit to my symptoms.

I still had a small doubt because I was not having bizarre disinhibited behavior like running down the street naked as frequently described as a symptom of Pick’s Disease. He stated that he now had four patients with BVFTD, and none of us exhibited that type of behavior. It was not unusual to have BVFTD present with a set of symptoms like mine. He also said it was unusual to see four patients at once with such a rare disorder. It boosted my confidence a little to learn that he had experience with other BVFTD patients.

OK. I now had 4 (Four!) doctors confirm that I had BVFTD. I guess I have a diagnosis. Finally! I have Behavioral Variant Frontotemporal Dementia. BVFTD. That is that until further changes, or my autopsy confirms or disproves that diagnosis.

We discussed the drugs, and decided all I would continue taking would be the Ritalin. I would experiment a little to ascertain if I really was seeing a benefit, and even try upping the dosage from 10 to 20 mcg over the next few weeks. He wrote a new prescription for the Ritalin because apparently you need an actual written one each time. It cannot just be refilled like most medications.

I told him that my FMLA leave was over, and that my HR department had requested a note from him saying I would not be returning to work on Monday. We briefly discussed the fact that I was disabled due to my BVFTD. I still did not, and do not, feel disabled. I also know for a fact I cannot in any way perform even the basic requirements of my job. He wrote me a note on his prescription pad, and said I could have his office staff FAX it to my HR department. The appointment was over, and he wanted to see me back in 2 months. The FAX was FAXED!

I spoke with HR again, and also my boss at work confirming they received the FAX, and letting them know in person I would not be returning on Monday. I made arrangements to clean out my desk over the weekend because I really did not feel up to having people stopping by while I was doing it. I could go in another time to say my good-bys.

I will not be returning to work because I have BVFTD.


  1. i have had so much trouble getting a diagnosis comfirmed, dr. just said picks like i had a cold. getting mri yook2yrs. and no one has even done any research excepy me,i am verry much alone.

  2. My husband just had the spect scan at the Amen clinic done a couple weeks ago. His brain looked like someones with dementia! He is 43. The reason he went and was evaluated was his personality had drasticly changed he was diagnosed with two personality disorders, I read about picks and besides the language problems that he doesn't have everything else is him. He has changed into a diferent person in the past two years the progression of his disorders was frightening. he doesn't drink or do drugs, the widespread damage the doctors have no idea what it is from. My husband is still working as a mechanic.
    They told him if he does nothing he will need full care in 5 years if the damage continues. The doctors said the brain can heal in two years they are trying to get him to take anti-seizure meds to get his temporal lobes functioning, he is on fish oil, advil and many vitamins he says he is feeling better already. ( although his behavior and mood, apathy is the same.) What bothers me is that he has all the symptoms of picks I wonder why that wasn't addressed or is it to rare? If it is picks is it still possible to heal the brain? Or because of the protein build up? it will inhibit healing? How can they be sure of a diagnosis even with the spect scan?
    Thanks for your time I think it will help many people you documenting your progress good luck and hope to hear from you!

  3. Thanks for your comment, Colleen.

    Nobody knows for sure exactly what can and cannot be healed in our brains. Every case of FTD is different. I have seen some early research that Pomegranate Juice may dissolve some of the protein build-up, but I am skeptical - especially because I think it tastes like cough medicine

    There is a post related to that research here on this blog.

    Some days are better than others.


  4. My wife has gradually exhibited symptoms listed for Pick's. We were at the disadvantage of not having health care. After special arrangements we finally got the diagnostics needed and Victoria was diagnosed with Frontotemporal Lobe Dementia. Your comments about a roller coaster ride hit home. We got the diagnostic about the same time as you. Victoria however would never be able write anything about her experiences as she has become mostly illiterate dating back into 2009. She too was very intelligent and had practiced as a Registered Nurse until the early 2000s when a pattern started of being unable to keep a job. Fortunately, she was awarded her disability and got on Medicare in January of 2011.

    Our family understands the stress and frustration of this disease. Victoria doesn't comprehend that she has dementia.

    God bless you as you deal with this in your life.

    We have a blog started chronicling her condition at http://www.copingwithfrontotemporaldementia.com

  5. Thanks for the comment Greg.

    I visited your blog, and I recommend others do also. Keep up the good work because our stories need to be told. In many cases it is the only information available.

    All my best wishes to you, Greg and Victoria.

    Some days are better than others.


  6. Hello Lee,
    Thanks for keeping this blog. Apart from being a very articulate account of the diagnosis of a rare and destructive disease, it is bloody funny.
    "Ours" isn't 'behavioural variant', but seems to be the PNFA type. Not nice for anyone but particularly frustrating for a woman who used to write for a living.
    Keep up the good work with your blog, and I look forward to reading much, much more.

  7. Thanks for the comment, Curious Reader.

    I appreciate the encouragement.
    Some days are better than others.


  8. I am a geriatric psychiatrist who takes care of people with FTD.
    Your blog is remarkable, funny and inspiring to say the least.I draw inspiration from your writing personally as well as professionally.
    I have a better understanding of what my patients go through because of you.
    Keep writing friend

  9. My friend has been diagnosed with Picks and it has been very hard. Your blog was informative and I will continue to follow it. be well and god bless.

  10. My husband was diagnosis with FTD in Jan. 2010 but the Dr. did not tell me which variant. It took 4 years to get a PET scan after he when on Medicare because his insurance would never pay for it. After reading your blog, I am sure he has Behavior Variant. Thanks Lee.

  11. Thanks for the comment.

    Maybe I will be able to get a PET Scan next year. As of now my insurance still will not cover it. Next year my insurance should change.

  12. Hi Lee, I'm a neuropsychologist from France and also a junior researcher, working on bvFTD and frontal cognitive functions.
    I'm not very old, but I have a strong experience with bvFTD patients, working in the first national reference center, and conducting neuroscientific researches. I've seen maybe 60 or 70 bvFTD patients and their carriers during these past 6 years, for assessment, interviews, or cognitive rehabilitation, which is a big number assuming that bvFTD is a rare disease... but this is the first time that I've read a patient blog, and the first time that I read something like this.

    Your blog, and particularly your vision of the diagnosis announcement, is very moving, and is quite interesting to read... Your force and optimism are also exemplary and you're showing what needed to be show : patients with neurological condition are not stupid, crazy or useless. They are not old peoples waiting for the end, but peoples full of life and still capable to do many, many many things normally.

    You should think about writing a book or something... It could be useful to patients, to doctors, to specialists, and to the public who've seen all these sad documentary about Alzheimer, showing these very old patients who cannot do anything, and who are just waiting for the end... It doesn't show the reality, and I'm glad to read a better reality through your blog. Thank you !

  13. I have been very frustrated trying to get a diagnosis of bvFTD for my "mentally ill" mother-in-law. She has not wanted to shower for 2 years. When you try to help her she kicks and screams and flails her arms. She will try to punch you too. She does not do anything as far as hygiene, not even run a brush through her hair. She wears the same clothes over and over. After much time passes, she will change her underwear by putting the dirty ones back into the drawer. She cannot drive, balance a checkbook, cross stitch, or pick up a dirty towel off the floor which previously she was very OCD about! We have seen a psychologist who agrees that she may have bvFTD. However, he has been transferred to another practice. We had to send her inpatient because she was out of control. They put her on remeron & abilify. We were able to get her disability and she is living in an assisted living facility. In the mean time a neurologist checked her labs (they were fine) and we had an MRI and cognitive testing done through a Neuro-Psych. These 2 docs believe she has a mental illness, although the doctor who originally read her MRI says she has "moderate frototemporal brain atrophy". She had a new psychologist step in and he felt she only needed to be treated for depression, and that she should not be taking the abilify. So he gradually decreased her medications. During this decrease, we went to Johns Hopkins in Baltimore to an FTD Neuro-psych specialist. He felt her MRI was read incorrectly, that she does not have atrophy and that she has psychotic depression. She needed to stop taking the abilify and be switched to Welbutrin. His strongest recommendation is ECT Therapy because she has not responded to any other medication. Exactly 2 months to the day from stopping her anti-psychotic med (abilify), we had to have her admitted to an inpatient facility, and this time her behaviors had gotten worse - the worst we have seen so far: running up and down the hall in just her bra and underwear, trying to urinate and defecate in places other than the toilet because she said, "If I go in the toilet it's just going to mess up the place and flies will come out and be everywhere". She also says she has lost her memory that is has been wiped out, however if you ask her for dates (children's bdays, what today is, etc) she knows them. But she says she has forgotten how to shower, how to clip her nails, how to go to the bathroom, and any other etiquette that follows, i.e. washing hands after using the bathroom. She will ask what she is supposed to do next. She just turned 55 in March. Now that she is going inpatient, another doctor wants to put her on Zoloft and Ativan because "we need to treat the core of the problem which is agitated depression". I can't convince anyone that she may have FTD. Only time will tell I suppose.

  14. If anyone has any advice, please let me know. Your support is very much appreciated.

  15. My mom was diagnosed with having Pick's in 2008. She went downhill very fast and passed away in 2011. We had an autopsy performed, and were told she has bvFTD due to a genetic mutation called C9orf72. My sisters and I have been to see a genetic counsellor who says we have a 50/50 chance of inheriting it. We can get a blood test to verify this type of dementia. It's a fairly new thing discovery. I really think people should see a genetic counsellor if being diagnosed with bvFTD.

  16. I see how old these posts are and know they probably won't help anyone at this point but I hope it will help future people dealing with FTD who stumble across this blog like I have.
    One cheap way to find out if you or a loved one has FTD is to have your DNA tested to see if you have one of the known genetic mutations which cause it. What I did is sign up for 23andMe, download my raw data, then upload it to promethease.com and codegen.eu both of which compare your genes to known disease causing genes. Having dementia like symptoms I uploaded my DNA to those sites and found I have a mutation of the GRN gene, all of the known genes which cause FTD are dominant, so if you have just one allele for it you will get it in your lifetime. There are some cases where FTD isn't caused by a known FTD gene, so the DNA test can come back negative and you can still get it, but it is a good test to have done. It costs under $200 dollars to find out if you have one of the genes. Hope that information helps someone.

  17. Old Posts? This was when I was diagnosed. Read some of the current ones. I do not post as often because I don't have much to add, but still post updates on my condition.