My Second Appt after initial Alz Test

leap4artnyc · July 23

Note, I expect I will go to a funny farm after this and I will need to rob a bank as I need to pay someone to get me to these tests

I met with my neurologist today about Alz and the next few weeks. I am basically just listing what will happen and will fill it in as time goes on. My writing represents both ALZ but also my MS

Dr J believes it is Very Unlikely that I have MS based on my MRI/s /blood work. Weird eh diagnosed in 1995

Dr Jeffries commented that The Alzheimer's test results show likely some degree of Alzheimer's. And more testing is needed which will take roughly six weeks before I start any medicine or such!

Recent blood tests of mine shows weird things such as Chromosomes abnormalities. I had about 12 vials of blood taken. (One time I had 36 vials!!

What we will be doing. My insurance needs to approve all of this

The good news is I don’t have to have a lumbar puncture or such. Some of the MRIs they have done can be used

I will have a PET scan looking for Looking for Amaloid deposits at Wake Med PET imaging

I will meet with a Neuropsychologist for memory testing in person and done with online meeting or something At Triangle neuropsychiatry

I will fill this in when I get my doctors write ups as she tapes her info

She has no idea why I shake so much and doesn’t believe it is Parkinson’s but she doesn’t know why I have it either

My blood test showed chromosome irregularities. Nothing about me is Ever what regular people have

Leukodystrophy refers to a group of rare, genetic neurological disorders that affect the brain's white matter.

These conditions harm or prevent the healthy growth of the myelin sheath—the protective insulating layer that covers nerve cells in the brain and spinal cord (similar to the rubber coating around an electrical wire).

Cause: It is typically caused by genetic mutations that impair the body's ability to produce, maintain, or metabolize specific proteins or fats needed for healthy myelin.

Impact on the Nervous System: Without functional myelin, electrical signals cannot travel efficiently between the brain and the rest of the body.

Common Symptoms: Depending on the specific type, symptoms can include difficulties with balance and mobility, muscle stiffness or weakness, sensory changes, and cognitive or speech impacts.

Varieties: There are more than 50 distinct types of leukodystrophy (such as Adrenoleukodystrophy, Metachromatic Leukodystrophy, and Krabbe disease), each progressing differently.

Really???

Because leukodystrophy encompasses many different conditions, the exact symptoms, progression, and management depend entirely on the specific subtype and individual health context.

And I am going to try to get a second opinion but I am not going to hold my breath.

jaycey · July 24

While the details are different, I have so much empathy for your journey through diagnosis. It took almost 4 years for me to be diagnosed (with a rare subtype of Alz). They said it was myesthenia gravis (drugs that had no impact whatsoever). Cataracts (an unnecessary surgery). And then a whole year where they sent me away because they said it was nothing & said if I really still had issues I could come back. And I came back and then a PET scan showed what it was. All that meant that it was 4 years in which I could have been receiving treatment. 4 years where I knew there was something wrong (first I couldn't recognize faces, then I could no longer read handwriting or fancy type faces, then I could no longer do really simple math).

it was terrifying and frustrating, and I imagine you are feeling some of those same emotions. I didn't have anybody to support me - I hope you do. In any case, persevere, don't let doctors tell you what you feel and experience. And try to take care of yourself throughout. And keep looking for doctors who listen to you.

My Second Appt after initial Alz Test

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