I pray, dear Shin, that you are given the peace that passes all understanding and that the Holy Angels comfort you in your affliction just as they comforted Our Dear Lord in the Garden.

Thank you for your example to me of how to persevere in faith, hope, and gratitude.

Adding you to my daily Rosary shin.  

Hello, Shin!

Some of your symptoms sound like MS, has that been ruled out?

I found an article about 16 other diseases that are like MS.  Hope this helps.


https://www.everydayhealth.com/multiple-sclerosis/symptoms/conditions-commonly-mistaken-multiple-sclerosis/


Keep fighting the good fight!

Praying 

Thank you josefamenendaz, thank you FlosCarmeli13, thank you everyone. Praying and praying for you too.

I looked at the 16 diseases suggested in that article.. it took some time but it doesn't look like I can find a fit. I will keep them in mind if other symptoms matching these conditions develop. In the meantime I will keep searching.

I will go into detail a bit here.. I have ordered a medical grade genetic test kit, to see if I have any genetic predispositions to certain illnesses. Certainly I have no knowledge of anything like this running in my family. I'll also be getting another private lab test from DirectLabs this time for GI Microbial Assay, since my symptoms seem to worsen with food intake.. whether this is just because my metabolism is no longer slowed down.. or something else, well something else is only a remote possibility but it is desperate straits.

My tremors come in waves.. I get an attack for some hours.. then some miserable times for awhile after but not a peak attack.. then with medication things are just under control enough to function.. but the non attack times are also rising and worsening so that the medication can't keep up. I have to get a new medication soon that works or I'll be unable to care for myself. . and always miserably shaking too much.. that is a very possible future in the coming months. I am trying to get my mother out here to visit and break the news to her.. it's a long drive for a senior citizen.. and hard news to give her when we're supposed to be celebrating Mother's Day, it will break her heart, I've been praying to get better before then.

I see my neurologist next hopefully on the 14th.. then I have scheduled an appt with the department head of neurology on 7-21. Hopefully this will not interfere with the care the neurologist I am seeing provides, my seeking another opinion from his boss. He is overworked right now, he's informed me as much. It's not a timely date for the appt at my current rate of decline if I wind up only seeing his boss with a break inbetween. I hope to get a new medication either shortly (I've requested it again) or on the 14th. Well I have gone on a bit.. it is desperate straits here..

I am doing my best to cling to His Sacred Heart and find consolation therein.. to surrender to Providence.. I am just an ordinary person.. it's hard to escape from the natural feelings of fear and the physical pains of this, most of the time I am unable to, I am not so good. I know it's benefiting me in some ways to suffer like this spiritually, but I would never choose this in a million years if not forced to go through it.. I would far rather travel a gentler path of spiritual communions and living a simple life. I'm normally a private person.. but it's really benefitted me to have the prayers and support here and hear the suggestions... I appreciate everyone's prayers and consoling words from the bottom of my heart.

Well I have gone on awhile.. forgive me.. This is where things are right now. Just wanted to let folks know.

Hello, Shin!

Some of your symptoms sound like MS, has that been ruled out?

MS has mostly been ruled out due to the lack of any visible lesions in the MRI.
The article you mentioned, the one possibility out of them all -- neuropathy that is something I think that most likely needs to be explored further. When I last spoke to the neurologist he said he thought some sort of chemical imbalance was possible. I asked about the possibility of a brain tumor, which was too small to show up on the MRI, he said it was unlikely as it would have to be in just the right spot to affect all of my body as was being affected. And since my symptoms began in my face and the spread downwards and through my body, it's unlikely to be a spinal cord injury of some kind as they affect where the injury is and below rather than the head.
I had an EMG/NCV (nerve conduction study) where they stick ultra thin needles in you and study how well your nerves are affected by electrical stimulation, and I passed which is against some kinds of neuropathy. But this was very early on in my symptoms, though the study tends to be quite sensitive, I will likely have to get another one at some point. I need to discuss more with the doctor what the likely cause is and what can and can't be tested. I may have to get a lumbar puncture to see if there are chemical imbalances in the spinal fluid, but this has not been suggested by him yet and I think they want to have an idea of what to test and look for when they do it rather than just do the test for a general look.
I've been on sinement which is a dopamine increaser normally used for parkinsons, and it has had no effect. So testing for dopamine imbalance would likely not be necessary. Next will be another neurotransmitter type affecting medicine of some sort most likely. Either gabapentin or klonipin.. Well.. I am getting a crash course in neurology. I've never been the type to take medications unless absolutely necessary.. now it is.

Kyrie eleison.

Please - we want to hear you 'keep talking' Shin.   I think your sharing is influencing a lot of suffering people who read your lines.
It is very rare for a person to have such great humility to confess out loud that they do not want the suffering and if they could get out of it they would.
I offer my small sacrifices/fastings and sufferings asking God that he may deliver you from yours.
Your sharing has strengthened my soul.   God bless you.

Hello Shin,

I was wondering if your genetic test includes Huntington's Disease (HD).

https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/huntington-s-disease

This article mentions HD and similar conditions.

https://movementdisorders.onlinelibrary.wiley.com/doi/10.1002/mdc3.12312


Praying