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Joined: Mon Jan 11, 2010 3:47 pm
Posts: 3
Location: Sterling, Virginia
Post New to this forum
Hi,
I have FTD, frontal temporal dementia and a neurologist that I recently saw believes that I likely have a variant of FTD with Lewy Bodies. I have frequent nightmares/night terrors in which sometimes I have woken up screaming or jumping out of my chair. I also have had occasional visual hallucinations and the neurologist I saw told me that this was all consistent with having Lewy Bodies. I have read some articles that say diagnosing Lewy Bodies like trying to diagnose Tau bodies in FTD is difficult and may only be known for sure at autopsy if then. I am glad to have found this forum and I hope to gain information and also be able to give support.

I have a blog where I write about my life, health issues, etc. feel free to stop by sometime. [url]Iamdying.net[/url]

Mermaid[/url]


Fri Jan 29, 2010 4:07 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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mermaid,

I've never heard of an FTD variant with Lewy bodies. It must be vary rare. Can you point to an online description of this variant? I couldn't find anything about it on the AFTD website. I'm only aware of three variants of FTD: behavioral, semantic, and progressive nonfluent aphasia.

There are a few local FTD support groups. Is there one in your area? (See ftd-picks.org) My guess is that you'd have more in common with FTDers than LBDers, primarily because of the age difference. LBD is the second most common dementia of the elderly, while FTD is the second most common dementia of the middle aged.

Do you recommend any FTD online support groups? One woman I know with FTD swears by the ftdsupportforum.com. It seems that most of the forums out there are for caregivers.

I read over your blog post about meeting a neurologist who said that he thought you didn't have FTD but, instead, had LBD. Which neurologist diagnosed you with "FTD with Lewy bodies"?

I hope you've signed up for brain donation!

Robin


Last edited by robin on Fri Jan 29, 2010 4:42 am, edited 1 time in total.



Fri Jan 29, 2010 4:16 am
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Joined: Mon Jan 11, 2010 3:47 pm
Posts: 3
Location: Sterling, Virginia
Post FTD with Lewy Bodies
Robin,
When I was first diagnosed with FTD last year and my husband went to national convention, he brought back a lot of information. I did read an article that mentioned FTD with a variant of Lewy Bodies but at the time I did not pay much attention to it because I had not been told anything about Lewy Bodies. We moved and I saw a different FTD specialist who said that I probably had an FTD variant with Lewy Bodies because he said I had many symptoms that were consistent with Lewy Body Dementia. I have been diagnosed with FTD by an MRI of the brain and neuropsych evaluation but I am atypical for an FTD patient because I do not act out and I can communicate and I am aware of my disease.

I belong to the FTD support Forum which is mainly a forum for caregivers but there are a few of us with FTD who are able to communicate and we have a private chat twice a week.

I was hoping to find someone else who had Lewy Body Dementia but it appears that there is the same kind of problem finding people with Lewy Body Dementia who actively post to a support group.

I have a friend with FTD who goes to the local Alzheimer's Support Group for people with pre senile dementia in Idaho. I am unable to do that because I have complex regional pain syndrome stage III and inoperable degenerative disc disease with bulging discs in my back. I spend almost all of my time in a recliner. I am almost totally disabled.

Mermaid


Fri Jan 29, 2010 4:40 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Sorry, I edited my post, rather than posting this new question for you:
I read over your blog post about meeting a neurologist who said that he thought you didn't have FTD but, instead, had LBD. Which neurologist diagnosed you with "an FTD variant with Lewy bodies"?

Yes, there are very few patients here with LBD who are able to post. There's a private patient-only area that is part of this Forum. Have you posted there? I see that it hasn't been active in awhile.

Another young-ish LBD patient recently posted here. Her username is something like "pubpanda." Perhaps you can email her directly.

There are a couple of LBDers with their own blogs. See knittingdoc, who is Dr. David Thomas.

It must be enormously frustrating for people who have great insight into their condition and can't find a large community of fellow travelers.

Have you read the book "The Banana Lady"? I wonder if there is anyone in there with atypical FTD as well?


Fri Jan 29, 2010 4:45 am
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Joined: Mon Jan 11, 2010 3:47 pm
Posts: 3
Location: Sterling, Virginia
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I have seen three different neurologists, the first one diagnosed me with FTD, the second one said he didn't think I had FTD even though I had documented proof of FTD because I did not have the symptoms but I might possibly have lewy bodies, the third neurologist who I have seen recently told me that he thought I had FTD probably with a varient with Lewy Bodies because of my symptoms. I have an appointment with the neurologist who originally diagnosed me in March. We have moved from RI to TX and then to Virginia in one year.

Hopefully this gives you a clearer understanding of my situation.

Thank you for the information.

Mermaid


Fri Jan 29, 2010 7:45 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Welcome Mermaid,
You should be admitted to the patient area before days end and as Robin pointed out it has not been active at all but I want you to be able to post there is you so wish too!

_________________
Irene Selak


Fri Jan 29, 2010 11:28 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Mermaid ,
You now have access to that area!

_________________
Irene Selak


Fri Jan 29, 2010 12:03 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3317
Location: Vermont
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Dear Mermaid - So sorry for your health situation. You will find a lot of kind, compassionate, understanding people on this forum and on the chat. I hope you are able to connect with others who have similar diagnoses, as talking about what you're going through will probably be a relief and a source of strength for you. I hope you can get a more concrete diagnosis, but my limited experience with is that it is extremely difficult for some people to get a "solid" diagnoses.
Take care, Lynn


Fri Jan 29, 2010 1:51 pm
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