F T D Anyone know Frontal Temporal Dementia? Symptoms startiNow what?

I was diagnosed two years ago with FTD and suspected CTE. The problem I’m having now is body pain, especially under my arms and itching all over. I know my blood enzymes and hemoglobin is elevated. Does anyone have any idea what this might be causing the symptoms?

@volmania97

Did you have accidents/injuries to your brain? How long ago did your symptoms start and what triggered them? My teenage son had a couple concussions when a child and his family genetics make him at a higher risk of dementia/Alzheimer's.

What are your current symptoms other than your bloodwork results? Are you working with a neurologist now? Did you have a recent MRI of your brain and cervical spine? Have you had a small fiber neuropathy skin punch biopsy? Small fibers can affect autonomic nervous system/heart/lungs/digestion.

Have you had an EMG/nerve conduction study of your upper and lower limbs?

I read that your bloodwork may be tied to low oxygen levels. Do you have any breathing issues? Do you feel tired/fatigued easily? Have you been tested for sleep apnea? Any brain damage can affect the functioning of organs due to disrupting communications from brain through spinal cord to organs and limbs.

1. https://www.mayoclinic.org/diseases-conditions/chronic-traumatic-encephalopathy/symptoms-causes/syc-20370921
2. https://my.clevelandclinic.org/health/diseases/17686-chronic-traumatic-encephalopathy-cte
3. https://www.health.harvard.edu/mind-and-mood/what-is-cte-understanding-chronic-traumatic-encephalopathy
4. https://www.healthline.com/health/overview-of-chronic-traumatic-encephalopathy-cte
5. https://www.mayoclinic.org/diseases-conditions/frontotemporal-dementia/symptoms-causes/syc-20354737
6. https://my.clevelandclinic.org/health/diseases/21075-frontotemporal-dementia
7. https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/frontotemporal-dementia
8. https://www.theaftd.org/what-is-ftd/disease-overview/
9. https://www.mayoclinic.org/symptoms/high-hemoglobin-count/basics/causes/sym-20050862
10. https://my.clevelandclinic.org/health/symptoms/17789-high-hemoglobin-count

Hello Feisty woman. I am blessed to have my husband with me and he's retired so he can fuss me to his heart's content. Of course the more he fussess, the more controlling he becomes. 3 doctors (or NP) have told me I can't drive anymore. Between the FTD and Seizures, driving was a no go. I've always been an introvert who likes to stay quiet and no real friends. There is his family here and they help with him but they are not very close to me so no real talking with them. My family is 3 hours away and my sister has always understood me. Probably because she understands. She has disabling migraines and she's lost part of her sight. SO she can't drive either. I feel SO trapped. 2 more tests to go and then I can rest and know where I stand. Oh and my best friends through life has been reading and journaling. I stopped reading 2 years ago and stopped journaling 3 years ago. After all this started with a TIA or seizure, the MRI showed the brain shrinkage, it's been one dr and test after another. I'm ready to stop.

I know! FTD is SO frustrating. I've been diagnosed 2 years. I'm 66. I'd be curious to know how long to have but really, what difference does it make. My grandchildren are grown. My husband is 79, a touch clumsy but still spry for which I'm blessed. I can't do the things I used to do. Texting this is taking forever.

@dlydailyhope
Just a thought, those of us with dementia usually have trouble with “over load”. We can only handle a small amount of anything (instructions, organizing, noise) before we get confused, and shut down. Our “executive function” usually disappears early.
Maybe, you could help us by keeping your questions and resources to a minimum. That would help us focus on one or two things without overwhelming our brains. I appreciate your help. Thank You.

@SusanEllen66
I totally understand your point. Your response would actually be for everyone responding in length of response and links, not just mine. My teen son has ADHD and has challenges with overload and executive function so I can empathize.

One thought is to read comments in short increments and take a break or don’t read the comments at all if they are too much. No one is forcing anyone on Mayo Connect to post, read or comment. Those responding to others with questions and comments are showing they care because they stop to take the time to respond rather than just move on.

Have a good day! 🙂

I have CBS, corticobasal syndrome, a form of FTD.

Have you heard of AFTD? They are advocates and researchers on all forms of FTD.

@dlydailyhope
I agree. I know you care. That is why I wrote to you.

I’m sorry, I just wanted to point out how a senior citizen with a brain that is getting eaten away by disease can get frustrated, and overloaded. Almost all of us have to wait years for a diagnosis. Some will never get one until Postmortem (too late)!

I’m sorry about your son. That has to be hard on both of you.

It’s a wonderful testament to the dementia sufferers on here that we can still put our thoughts such as they are, on “paper”. I have traits of FTD, and am here writing and doing my best to stay “normal” they call it masking.
However, it’s exhausting. Pretending you are still the way you were takes work.
Couple that with fear of the future. We have an incurable, fatal disease, that causes stress to the entire family.
For myself, I am currently searching for an assisted living, memory care facility to take care of me when the time comes. I will have to sell everything I own to pay the extremely high costs. Where I live, it will be cost close to $10,000 each month!

I wrote this to help others going through similar issues.

Thank you for caring about us.
I wish you and your son a blessed week..

@aoibhin
I just looked for AFTD. All I saw was that it is FTD.
CBS is as you said.

Yes, I joined AFTD.

I also recommend, http://www.daanow.org
DAA is for people with ANY TYPE of dementia. They hold Zoom meetings hosted and attended by people with dementia. They are throughout the week. Please check them out.

I have traits of FTLD according to my neurologist.

@SusanEllen66
I really do feel for you. You have a lot to deal with and I totally get masking. My son’s father (my ex), has ADHD (late diagnosis), Autism (undiagnosed), and early onset Alzheimer’s (he is in denial but I see the signs like I did with his mother…now I know what to look for and notice differences). He is 60. His mother (my mother in law) had early onset Alzheimer’s probably in her 40s and 50s but no one noticed except for me so I encouraged her on getting evaluated. I was more of her caregiver than her son. I was exhausted because I worked 60+ hours a week and had a toddler/young child at the time with no family at all. I am currently 55 and my son is 15. I am his sole provider and the future is scary for sure. I have so many health issues and getting surgery (3rd) on my cervical spine next week.

Do you have family that can help you navigate through all of this change? Do you have a support system around you so you do not feel alone?