Sorry you're still suffering so much -- I just posted to your other comment about magnesium supplements.
Ask you doc for any recommendations of vitamins/supps, and if you get the same answer I got from my LLMD (LLMD: "Whatever"), then think about figuring out your own approach. Everyone is different, but happy to share with you what I take, fwiw.
I have a fairly reliable indicator in the volume of my tinnitus. My recent stay in the hospital on IV ABX for a couple weeks really lowered the volume! Patience, the feeling better will come along, it's normal to feel worse before better. Like me, you've been packing this a long time. My LLMD likened healing to peeling away the layers of the biofilm like layers on an onion. Too many layers at once, and you'll be on your back!
I hear your question loud and clear...,sometimes I wonder too. I can tell you that where I used to have constant numbness in my foot and toe, that has left and not returned since starting ABX. Also, I used to get it in my face under my left eye. I still get tingly there off and on but not numb. (Knocking on wood right now).
I don't think I posted here, but I had my third MRI in 1.5 years last week. It showed no changes in the lesions which is great news, so I'm pretty sure MS is officially off the table but I will be anxious to hear that from my neuro on Jan 11th.
I am still have some bad days though with fatigue, pain in eye (always the right eye..), neck pain (like today...really bad), twitching, all that stuff. But from where I was a year ago....lots of improvement... So, I guess that means the ABX are still working.
Hi everyone!! Thanks for all of your replies... It's funny because to me, I don't actually feel like its a suffering of anykind, they are just nusances (sp?) I think the fatigue has been my biggest complaint.
All of the other stuff happens quickly or doesn't really bother me (twitching or clicking ear) the pain comes and goes, so at least its not constant. Well,, in the beginning of treatment, the calf pain stayed for about a week or two, can't remember, maybe it was the whole month
I guess you can say my brain fog is still hanging with me. I feel so stupid sometimes, and I get so annoyed when I can't think of a simple word.
Today, I called my mom to ask her a question, by the time she was done talking about random things, I couldn't remember what I called her for, then she asked me, did you need anything, and i said yeah, but I can't remember, then she started to try to jog my memory and the more she did that, the worse it was for me to remember ( I was more confused and frustrated) I kept telling her, hold on, let me think about it, ... finally after 5 mins, I remembered why I called her..
Soooo, frustrating.... anyone else have a question asked to "where something is " and your response is.. " oh yeah it's on top of the thing, near the door (meaning the cupboard) next to the black thing, (refrigerator). I hate that more than anything, I want to hit myself upside the head to spit my words out, THE RIGHT WAY THAT I MEAN TO!!!
We have that feeling of stupidity in common. The hospital had set me up with a nursing home. I was confident the old people I rent off of would help me. I complained and threatened to sue until I got my way. Got home, after the landlord had seen my mess, (while I was in the hospital) he wants me to move. Forget what I was doing a couple hours ago, and I'm supposed to organize a move? Your last paragraph reminds me of my mom. For her, many things have become whatchsamacallits. She's a wonder, God bless her, dad is lucky to have her. Dad, oh he has alzheimers, developed about the same time things went bad in me. Mom, she just keeps going, been running on artificial heart valves probably 20 years. A man couldn't have a better wife, or mom. Still glad I didn't go to the nursing home though. Too much freedom lost in that. Better to be poor and free than have that disability, controlled by someone else. That's just me, some need it, I can still walk, talk see, and type. And they haven't stolen any of my body parts, except for my appendix. God forbid I should get entangled with the regular medical community again, until it is my time to go. Remember, some will never come back, but the brain adapts by making use of previously unused portions to correct what is within its capabilities. Time is the big thing here, as I said, patience. Big changes might take a year and more.
Hi Bob, thanks! I definately have the brain fog, word searching, hard time remembering things (short term) and that constant "duh" feeling, it's so embarrassing when I am at my kids' school and talking to teachers, I feel like a complete fumbler of words..... I have visual impairments, optic nerve damage, nystagmus, and double vision, but.... I still love to read and get as educated as I can. I try to keep my brain strong by adding as much info as I can. I do not want to lose my brain power (what's left of it) ha ha!!
I don't know about anybody else, but I have a tendency to walk into a room to look for something, can't remember why I went in there to begin with, and then my OCD kicks in!!! I will sort through my desk and organize it when I was supposed to get a towel to go take a shower!!! Crazy huh!! ?? LOL
Glad to hear that you can still do things, that's wonderful!! Hope you have a great Christmas!!