Reassurance about white spots…

[[ho...]]

White spots on brain anyone… posting for reassurance… 
So my anxiety and worry gets the best of me in this. Due to bad medical advise I tapered 4 years of X as needed at .25mg then was told detox was safe and did an 8 day and here I am 5 years later… 
My fear got the best of me as I couldn’t believe 18 months out but this is what drug withdrawal felt like and got an MRI expecting it to be normal. Now 
keep in mind my symptoms did not start until I started coming off the benzo and the only thing I ever had prior to withdrawal with mild anxiety. I had an brain MRI that showed if you white spots. My fear got the best of me and thinking it was MS in conjunction and I forced to have three more MRIs without contrast up until March 2022. They actually lead me in to having setbacks because I was so brutally terrified of what the results would be. I met with Neurologist last year who thinks I had a one time episode of demyelinization from the rapid withdrawal. She since retired and my symptoms still morph and change, and I’ve had a few setbacks, but nothing that tells me I think I have MS or anything  like that. It’s all symptoms of a overstimulated revved CNS. 
And my concern is finding another Neurologist who l understands this which is few and far bwteen and get another MRI were there could be a few more white spots from this ordeal that really aren’t harmful. Has anybody else been in the situation and had a few white spots from this and their Neurologist told them it was nothing to worry about? I really want concentrate on getting better and not focusing on all of the which things already which is called me a few setbacks based on fear and rocked my cns into deaper hell  and his bit me in the butt more times than I can count in this when I know I need to let go and stop with the anxiety and fear to let my brain calm down and heal. 
I even did stem cells but am still waiting to see more progress from them also. 
 It’s been 1.5 years since my last mri and we just left our vacation and those what if fears popped their ugly little heads with so much fear. Just need some reassurance. 
And people on other forums are trying to say I may have Lyme and scare me too revving me up saying oh maybe it was dormant. I was fine prior to this! 
The more I push for tests the more cans of worms I opened that I didn’t need to and end up worse instead of trusting in my healing and letting go!

[[ho...]]

A very wonderful buddy thinks I’m still so bad as my ferritin and iron is so low so I’m working to raise that but hahe just been paranoid! 

Just need a peace of mind! Thank you! 

[[Pa...]]

Oh my goodness hopeful0518, what a horrible time you've had!  From what I can see, you've already proven you don't have some horrible condition by letting us know your symptoms morph and change, something absolutely familiar to us.  

I'm sorry the fear has taken hold of you so badly but I'd place my faith in the doctor who said it was a one time event caused by an over rapid withdrawal, I'd hate to see what my brain looks like after my cold turkey!

Please, please listen to those of us who have made it out of this, its temporary and while you are injured, you aren't damaged and you can recover.  Try to enjoy your vacation, distraction is exactly what you need, so let it happen. 

[[ho...]]

1 hour ago, [[P...] said:

Oh my goodness hopeful0518, what a horrible time you've had!  From what I can see, you've already proven you don't have some horrible condition by letting us know your symptoms morph and change, something absolutely familiar to us.  

I'm sorry the fear has taken hold of you so badly but I'd place my faith in the doctor who said it was a one time event caused by an over rapid withdrawal, I'd hate to see what my brain looks like after my cold turkey!

Please, please listen to those of us who have made it out of this, its temporary and while you are injured, you aren't damaged and you can recover.  Try to enjoy your vacation, distraction is exactly what you need, so let it happen. 

Thank you for your sweet response. When you’re going through this for almost 5 years and only 41 and our child is already 11, it’s hard to not wonder if something else is causing any of this.l as I’m so desperate to get out. But it’s not like I ever healed and then started with something else. I’ve also had a few setbacks and I’ve made this worse. If my MRI only would’ve had no white spots and have been perfect none of these extra worries ever would’ve been an issue but for somebody to say maybe you have Lyme is pretty scary but also I have the massive sensitivity to come along with Benzo withdrawal and yeah I was healed from benzo West Ronne just had Lyme. I could handle supplements and antibiotics without an issue and that is absolutely not the case. Also, just now from worrying about it all day today. My symptoms are through the roof and I am so revved up. 
she’s trying to tell me that my line antibody test wasn’t accurate and then I needed a lime lime, blot test, and then I could’ve had Lyme even though I didn’t know it, and it became active when I went through benzo withdrawal… yeah the only thing I had before benzos was not anxiety which is why I got on them, because my dad died. 

[[ho...]]

The things on a Facebook forum someone was trying to scare me when was not good. Neuro Lyme and all my regular dr tests aren’t valid…I do not have fatigue or muscle pain. I have a severely overstimulated CNS causing my symptoms 24/7 that get worse the more revved I am and are always there but each day sometimes I feel bad in it’s own way. 

Geraldine Burns said she heard of 2 young women with a few white spots and that a neuro surgeon said they could go away after we heal. 
I know I’m not the only one with them. 
 

[[Pa...]]

It looks like you’re fighting off the negativity, and good for you for listening to people who are experienced and calm.  I’d stay away from Facebook and those who are trying to scare you. 

[[ho...]]

1 minute ago, [[P...] said:

It looks like you’re fighting off the negativity, and good for you for listening to people who are experienced and calm.  I’d stay away from Facebook and those who are trying to scare you. 

 

1 minute ago, [[P...] said:

It looks like you’re fighting off the negativity, and good for you for listening to people who are experienced and calm.  I’d stay away from Facebook and those who are trying to scare you. 

I get maybe she was trying to help but our fear levels are so bad in this and some of us are so vulnerable (fear caused me 2 massive setbacks involving health anxiety which drove me to medical testing that made me worse as I was beyond terrified of the results) that stuff like that can rev us up more. For me, it started with OMG , I can’t handle antibiotics as they make me worse and herbs and everything so how would I treated? Then it starts spiraling. I’m thinking oh God forbid MS well I can’t take medication because everything sucks me back. How would I treated? And it just starts all this extra fear which overstimulates me a revs me up even more. 
now I’m like people with Lyme don’t have an overstimulated nervous system like you do. People with MS don’t have an overstimulated nervous system like you do. Maybe your spots were due to high glutamate, and as you heal, Geraldine burns is right and maybe they will go away or maybe you won’t worry about it anymore because you’ll start to feel better soon because the lady who reach out to you was correct and your ferritin being so low is a huge car part of why you’re still in ofpeople with Lyme don’t have an overstimulated nervous system like you do. People with MS don’t have an overstimulated nervous system like you do. Maybe your spots were due to high glutamate, and as you heal, Geraldine Burns is right and maybe they will go away or maybe you won’t worry about it anymore because you’ll start to feel better soon because the lady who reached out to you was correct and your ferritin being so low is a huge culprit  of why you’re still in this! Fingers crossed!

 

[[sc...]]

Hey there

I have this too 

I cold turkeyed off xanax numerous times (kindled) without knowing it. Finally realised xanax was the issue and CT'd for good. Wish I tapered. Anyway had an MRI and yes white spots. Had another a few years later and there were more. Neurologist tested me and said they are called unidentified bright objects. He didn't know what from but didn't mention my xanax use at the time. Interesting yours said it was from rapid taper. Mine said it isn't anything to worry about. I obsessed over it for a few years too. So the longer I was off xanax the less I obsessed over things. Also the lesser the symptoms became that i thought were associated with the spots. I think during withdrawal I got ocd about many things. So over time all these things got better for me. I still have a few twitches and insomnia here and there but much much better than before. It was just a matter of time for me. Hopefully u too. 

 

[[ho...]]

9 hours ago, [[s...] said:

Hey there

I have this too 

I cold turkeyed off xanax numerous times (kindled) without knowing it. Finally realised xanax was the issue and CT'd for good. Wish I tapered. Anyway had an MRI and yes white spots. Had another a few years later and there were more. Neurologist tested me and said they are called unidentified bright objects. He didn't know what from but didn't mention my xanax use at the time. Interesting yours said it was from rapid taper. Mine said it isn't anything to worry about. I obsessed over it for a few years too. So the longer I was off xanax the less I obsessed over things. Also the lesser the symptoms became that i thought were associated with the spots. I think during withdrawal I got ocd about many things. So over time all these things got better for me. I still have a few twitches and insomnia here and there but much much better than before. It was just a matter of time for me. Hopefully u too. 

Thank you so much! My nervous system is so overstimulated so logically it’s all this but knowing I have white spots I got terrified I developed MS in this even tho my in office tests were fine. When I get symptoms like leg and foot pins and needles I get nervous all over again yet I see other buddies have had that too and coming up to 5 years in this even tho I had setbacks doesn’t make this any easier and the longer it goes the more scared I get even tho it’s not like I healed and something else began. 
I was also scared to see a new neuro because I was afraid they’d send me for a spinal tap and already being as revved as I am and it’s bad head pressure the stress alone would set me back and the whole thing could set me back even worse and I can’t take another setback yet I want to heal and live and watch out son grow up. 

[[sc...]]

Ah yes 

I thought i had MS too. I also had the pins and needles but in my hands and feet. Also burning feet. Eventually I stopped seeing specialists. No one found anything anyway. Here I am in year 7 with a few annoying things but mostly good. The OCD in withdrawal was pretty real for me and hung around. Almost like I'd trained myself to obsess over things. Especially illness and getting tested for stuff. So I trained myself not to so much with CBT.  People still think I'm a hypochondriac tho. 

[[ho...]]

17 hours ago, [[s...] said:

Ah yes 

I thought i had MS too. I also had the pins and needles but in my hands and feet. Also burning feet. Eventually I stopped seeing specialists. No one found anything anyway. Here I am in year 7 with a few annoying things but mostly good. The OCD in withdrawal was pretty real for me and hung around. Almost like I'd trained myself to obsess over things. Especially illness and getting tested for stuff. So I trained myself not to so much with CBT.  People still think I'm a hypochondriac tho. 

Yes! I get tingling in my left foot and calf more then right but it comes and goes and I’ve decided to stop with the doctors too. I’ve also developed insane health anxiety and staying so amped up is keeping me in fight or flight and not helping me. I’ve decided to do the gupta  program and not concentrate on the symptoms and sensations anymore!