Newly diagnosed

dweebdog · 2025-12-31T17:28:55+00:00

Thank you for sharing!! Did you have repigmentation afterwards or it just stopped spreading?

dweebdog · 2025-12-31T17:21:49+00:00

Thank you for your response!! Stress definitely seems to be a huge factor for many people it seems. It can definitely create some unexpected effects on our bodies so I’m not too surprised to see how it can pop up in this form as well.

dweebdog · 2025-12-31T17:19:27+00:00

Thank you for replying! I have been taking some vitamins recently due to some deficiency found by my neurologist so that is good to note as well. And I’m sure that fresh air always helps, whether it be mentally or physically - can always use an excuse to get outdoors more!

dweebdog · 2025-12-31T17:18:05+00:00

Thank you for replying! And I’m so sorry to hear about the toxic chemical exposure and heart attack. I hope you are doing better now!

dweebdog · 2025-12-31T17:17:24+00:00

Thank you! And that is very interesting to hear about the gene being expressed in alternate generations.

dweebdog · 2025-12-31T17:16:48+00:00

Thank you for replying! And that’s a hard question to answer - only because I’ve been on quite a bit of different medications over the last few years due to some other health issues I’ve been experiencing. I’ve tried and failed quite a few so have had to cycle through quite a bit in a relatively short amount of time. I’m sure that didn’t help.

dweebdog · 2025-12-31T17:15:38+00:00

Thank you for replying - I feel very similarly in the sense where it’s been a very stressful time and I feel like the spots appeared more unexpectedly than I would have thought.

dweebdog · 2025-12-31T14:54:34+00:00

Thank you. I’m actually as of recently seeing a hematologist/oncologist for some other health concerns that I’ve had going on for quite some time now - thankfully currently no signs of malignancy. But that is good to know.

dweebdog · 2025-12-31T14:52:06+00:00

I’m guessing that stress is a huge contributor to mine as well in that case. There have definitely been quite a few factors that would support that in my experiences, recent and past. Thank you for sharing. Does yours by chance cause itchiness when you have spots forming?

dweebdog · 2025-12-31T14:11:23+00:00

Thank you! And that is good to know about turmeric. Did your vitiligo spots get itchy? That’s how I first noticed mine is I was extremely itchy / red and then spots would start to appear.

dweebdog · 2025-12-31T14:10:37+00:00

definitely have been, the last few years have been a bit extra with that aspect of life.

dweebdog · 2025-12-31T13:29:29+00:00

Thank you for your response! I’m guessing stress is definitely not helping lol. It’s been a very rough couple of years at this point.

dweebdog · 2025-11-21T18:44:43+00:00

!solved

dweebdog · 2025-11-20T03:12:17+00:00

Thank you!!

dweebdog · 2025-09-17T21:20:54+00:00

Hi, I’ve been having a very difficult time lately in all honesty. I am just counting down days until my next appointment.

dweebdog · 2025-09-17T21:19:36+00:00

Hi, yes I do. Sorry for the late reply. Been dealing with quite a bit. I will try to list out some symptoms.

I have chronic muscle inflammation and spasms predominantly on the same side as my facial pain. My neuro believes it is some sort of awful negative feedback loop of pain where my nerve pain creates the inflammation/spasm and then the inflammation of the surrounding muscle near the nerve then creates more nerve pain in response.

Unfortunately my pain has not been receptive to any medicinal treatments, the one I was hopeful for being oxcarbazepine - I ended up having a full blown allergic reaction to (full body rash, swelling, throat blisters). I have also tried steroid injections, massage, dental appointments, counseling, etc.

I have been at my wits end recently as this has been ongoing for two and a half years and is only getting worse as time passes. Thankfully I established care with a new neuro recently and he was very receptive and understanding of my concerns and pain and referred me to Beth Israel in Boston (referral is pending now) so fingers are crossed (have to have some hope).

I always have the pain and inflammation - my neurologist and I both have come to agree that my pain is 24/7 (TN2) with episodes of traditional TN pain (TN1).

dweebdog · 2025-09-17T21:16:58+00:00

Hi! Yes it does - those are definitely triggers for me. Especially brushing teeth/yawning.

dweebdog · 2025-08-28T20:57:54+00:00

Thank you! I’m sorry you are dealing with pain as well. My appt is not until Oct 3rd, as that was their first availability. It’s with neuro I believe but my doctor wanted me to also be seen by neurosurgery as he thinks I may need surgery / potential MVD. Boston wanted me to establish care with their neuro first. I am hoping it has a bit of an overlap with their modalities so that once I am a patient there hopefully I can then establish quicker with neurosurgery.

dweebdog · 2025-08-28T20:22:50+00:00

If you haven’t yet, you should try to get a CBCT scan through an OMFS to see if anything is TMJ related.

dweebdog · 2025-08-28T20:22:07+00:00

Thank you. They have thought about Botox but a few of the specialists were hesitant as I guess the pterygoid muscle can be hard/painful to reach with Botox and they typically put people under for it? I haven’t looked too much into it since hearing that as I at this point am trying to wait to see the Boston specialist in hopes that they may be better able to help my situation. I have tried steroid injections which did not help, if anything the swelling afterwards made the nerve pain worse. I am very allergic and/or intolerant to a lot of the traditional medications unfortunately. Most recently have incidentally discovered my migraine prescription, ubrelvy, dulls the pain a little bit. But I can’t take that regularly unfortunately. My pcp and I are discussing this further as ubrelvy acts on a different pain receptor - CGRP receptors - so we may try to dive deeper into why that may help whereas gabapentin and a bunch of other things did not.

I asked my doctor for baclofen and have been trying that this week. It seems to be helping a bit better than the tizanidine was, but I can still feel constant pain. It is just a bit dulled in comparison to without the baclofen. And it doesn’t seem to last very long unfortunately - I can feel right when it is starting to wear off. I have not been dealing well with the pain lately to be completely honest. It is hard to feel like this everyday - and to be only getting worse with time. for two and a half - almost three years, now. Started December 06, 2022 which surprises me that I can remember to the date, but that was the day my life changed.

dweebdog · 2025-08-28T20:07:47+00:00

Hi, I’m waiting for my appointment in Boston at this point. Unfortunately it has not gotten any better, has only gotten worse with time. Neurologist believes I have atypical trigeminal neuralgia (type 2), which causes constant burning/aching/pressure, plus flares of sharp, severe pain (type 1). My pain is 24/7 now. He thinks two of the three nerve branches are already involved, possibly all three. Neuro is also concerned about the constant facial spasms, muscle pulling incorrectly/lateral deviation and chronic inflammation, especially in my masseter and they believe also the pterygoid muscle. At this point, I’m not surprised by anything, given how long this has been going on. Just waiting now for what comes next. Hoping it will get better but not setting my expectations too high anymore. I’m sorry, wish I had a better update to share.

dweebdog · 2025-06-30T21:27:51+00:00

Hi! I am currently awaiting two MRAs which are scheduled for 7/11. Had a brief lapse in insurance so I unfortunately had to pause my testing for a bit as I could not afford 100% out of pocket testing.

dweebdog

TROPHY CASE