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

Posted by kahyo @kahyo, Apr 18 5:18pm

I'm 66 yrs. I've had 3 MRIs, 1 CT , EKG, EEG, pending PET scan. (1 more test and I could play scrabble. ) #1 MRI ER Diagnosed with TIA and pronounced microvascular disease during a trip. They referred to a Neurologist when at home. #2 MRI They said FTD. #3 MRI. Frontal Temporal Dementia plus Seizures, Waiting for results.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

volmania97 | @volmania97 | 6 days ago

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?

dlydailyhope | @dlydailyhope | 5 days ago

In reply to @volmania97 "I was diagnosed two years ago with FTD and suspected CTE. The problem I’m having now..." + (show)

@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

kahyo | @kahyo | 5 days ago

In reply to @SusanEllen66 "@californiazebra I understand the situation with your mom. The doc wasn’t concerned because I can still..." + (show)

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.