Hi everyone!
I spent yesterday and today in bed. Things have gotten so bad- and no teaching hospitals are not an option for me.
Along with pain under my left eye and behind my left ear- and the root canal still flaring- same things--I have developed purple mottling on my arms and legs. I freeze to death and am almost always using an electric blanket.....It's hard to hear out of my left ear---
Started in November- told it was ear infections- had balance test- normal- January had root canal- (mild facial pain)-- after root canal-- it exploded -- (the pain) now April-- and I am down to this.......
It is this Thursday I see the neurologist .........
I am not sure if I should try the dentist again or not-- if a person's body could reject the root canal-- ?? but it started w/ ear pain.......
I am so confused-- having cognitive issues- ..... my system is entirely blown at this point.
I am not sure what's happening---- I did have cold sores on my mouth nose-- from November on-- got them as a baby-- and no my mom didn't have herpes.... :P
My temple hurts---- I dont know what to do anymore----- I haven't posted b/c I don't know if this is TN-- or TN and root canal-- or TN, ROOT CANAL-- and AUTO IMMUNE........ I just don't know.
I AM SO FRUSTRATED AND SO SICK.
:(
beekeeper.
Hi Beekeeper,
I’m so sorry you are feeling so ill. Please ask your neurologist for a spinal tap when you see him on Thursday. You may find something, or it may put your mind to rest a bit. Praying you get some answers. Keep steady until you get there.
Peace and Kindness
Bellalarke
I'm confused about your arms and legs being purple -- has any doctor seen this?????
Try and write down a general time-line
for when each thing started if you can
Doctors like visuals
Let us know what happens!
The purple- it comes and goes-- a fine mottling- that looks like lace-- ...... Last night was so rough. Thanks for the info about the "time-line" - just laying it out simple- like that.....
See neuro tomorrow and family doc today. The family doc wouldn't work to get me in - the dentist just did it-. So tomorrow is first appt w/ him and am just praying he has some kind of idea w/ this...
I don't know.
I see the family doc today. It is a follow up and I know what she thinks. She said when all of this began that "You are not 1/2 as sick as you think you are." Well- I have avoided her since this..... but I do need to touch base. If things get critical this weekend, she does have the ability to get me admitted to a hospital if need be......
I know finding answers can take a long time- but this has been going on a long time and I have to get a ride from a family member who has to take off work to get me to these appts. procedures whatever -- that might ensue.... Perhaps, he can run w/ this a bit tomorrow-- It's almost an hour over there.... So we will see....
I've never experienced anything like this----- I suppose it just feels like my body is attacking itself.... and I am drained.
Please wish me luck. XX
beekeeper
Sweetie if you are having sy,ptoms of mottling sounds like so,ething vascular you should probably see your GP let him know your symptoms. Its just a good idea. See you are seeing your doctor, let us know waht he thinks. Take care of yourself. Sounds as though your really having a terrible time of it.
My Best
Joanne
You have one more day until you see the neuro. Go see him and make sure you make a list of all symptoms and talk to him at LENGTH about them so hopefully he can get to the bottom of this. Good luck to you! ((((((((((hugs))))))))))
I saw the family doctor today- and had residual rash on the lower left cheek area and the beginnings of a rash- on the right side. She says the discoloration of the hands and feet and legs are due to not doing much b/c of being sick.......
She had nothing to say about the article I found about this form of Herpes 7--- that causes shingles, enlarged liver, drug sensitivity and facial nerve pain. I don't even think she knew what it was b/c when I asked-- she wouldn't even address it.
I feel like I've been hit by a bus.... and have so many things running through my head--- I've read about here and on FB-- Osteomyletis (sp?)- this herpes 7------- the root canal- when you get that (I can't think- pain- fatigue)- essential- kind of "rotting" in your mandible that can only be seen by a special 3D dental scanner.
I'm tired. I don't understand any of this- . As I have told her on so many occasions, it feels like my body is attacking itself. She ordered another ANA and SED test, gave me a codeine script (codeine w/ no tylenol)- I was afraid to try Dilaudid pills as Morphine is something I can't take. I have to steer clear of the "tylenol" in drugs right now.
I wish I could post something a bit - like Well, at least she did say this________ So I could say, I felt a tad bit better about this situation... but I cannot...
She said Trigeminal Neuralgia, but my face is itching and I have rashy markings on both sides....
XX
beekeeper.
At this point, Shindig, I am so sick w/ so many symptoms- I try not to be afraid- I live in RURAL nowhere. I can't get to teaching hospitals and my family doc- just isn't on the ball w/ things. I just - am afraid I won't get an answer. It is odd how it all seems to me- to stem from the root canal.... but I don't know. I just try to keep breathing....
shindig said:
There are like 20 different types of herpes, herpes zoster is the common one anyone who's had chicken pox has it dormant in their body.
Then there are potentially hundreds of ailments that TN symptoms overlap with.
The neurologist will likely schedule an MRI, if they see a lesion on there they'll do a spinal tap and if that's all clear then it's really hard to figure out. If they see a compression then you're probably in luck.
Good luck with your docs, getting answers is half the battle, will be thinking about you and following your story.
love and hugs x
Thank you. This neurologist I am seeing tomorrow is supposed to be the best in city I'm going to. I had not thought of getting a big x-ray from an orthodontist, but I know my dentist would send me to an orthodontist. I will start w/ the neurologist first and see if he has any takes on this. I have photos and a time-line how things have progressed.
If this guy is worthless... I will have to try and work something out...
shindig said:
I was convinced my pain was dental related because it felt like a root or toothpick was pushing on the back of my sinus. But after getting to the orthodontist and getting a big xray he said everything was fine and referred me to a neurologist.
I was just pointing out it's a guessing game. I cant tell you how many different overlapping symptoms I have with dozens of illnesses I ended up not having. You should at least see about finding a neurologist in a larger city, they see so many more patients and are exposed to the really rare conditions. My GP was worthless and the first Neuro I went to was worthless as well.
Beekeeper, Shindig is so right about overlapping symptoms. I was even checked for a stroke or small bleed in the beginning. All kinds of things. It’s not so clear- cut when you don’t have the big shocks in the face. I started with deep ear pain and then progressed to boring pain in the mastoid area, then shocks deep inside my head. now it’s mostly a throbbing/burning most of the day in several areas that has settled into a miserable pattern. Also the mass of nerves in the head/face can cross-talk when they get going. The meds help but not if I am out socializing or traveling.
I know more now about rare and strange diseases than I could even imagine,but after a while you can’t let your imagination carry you away. It can destroy your nervous system:(
Even when it is known its TN or ATN, there still might be background issues to check out. I learned not to put all my hope in one test or one appointment. It’s a process.
Hopefully tomorrow will be a good firm beginning to your process of recovery.
Yes. I've been wondering about the systemic infection after the root canal. Honestly, I think I need to be in a hospital at this point. All I know to do is start w/ tomorrow. Having agonizing pain all over- deep in my left ear-- so exhausted can barely move.... My doc today was so inept so called in a form of codeine that hasn't been made in- a long time. Yeah, I'm afraid- and I have to rely on another person to take me all of these places..... It won't be so easy......
shindig said:
Yeah, I thought it was dental related, then I thought it was my salivary gland, then thought it must be the wisdom teeth, and I have an extra tooth between my 2 front teeth but up in the gums so I thought maybe that was doing it.
Then there are systemic infections that can get into the head causing pain, your thalamus can have a lesion causing pain on the opposite side, you can have lyme disease, I was diagnosed with "tolosa-hunt syndrome" after my first MRI but after treatment the pain was still there.
Shingles, even stds like ghonnoria(sp?) have had cases causing lesions on the area around the T nerve. Sarcoidosis is another cyst like deal that can get to your head and then it's called neurosarcoidosis. Which was the closest thing to my symptoms. I have a pain in my side on the same side as the TN but nobody has any idea what it could be, just that it hurts less with nortriptyline so they assume it's nerve related.
There are far too many what if's, I did it and became drained after a while just constantly agonizing over what it could be because the first doctors were worthless I'd been to.
Beekeeper, please try not to play the what if game in your head tonight, save your strength for tomorrow. We’re all watching over you from our own places miles and countries apart but we come together here and let that comfort you. Let that comfort you.
XoBellalarke
Go to the ER & don’t leave till they remove you with the law. I had to bring an attorney to my hospital bed to get someone to cut me open. I was paralyzing daily 7 doctors no one cared. keep fighting till you find a doctor who care to save your life god bless you & don’t rule out the saliva gland.
My first inclination -- because of your skin was to tell you to go to ER --- I would pack a bag - and if your neuro doesn't give you damn good reason why not ---- I would have him admit you to hospital. If he minimalizes your sickness -- get a friend or cab and go to ER yourself -- if you were my sister and this is all I knew about your illness from long distance - this is what I would advise.
Please let us know
I saw the neurologist y'day. He doesn't think I have TN- .. I know I was tested for lupus and was told this could be anklyspondilitis - I think is how you spell it. I didn't sleep last night from pain - and was put on Trileptal. My sister is a nursing assistant- works w/ a doctor- ... She thinks I panic w/ the pain gets really bad- and I wouldn't get admitted.
I told the neuro how sick I was-- he saw my hands and feet.... did blood work and today I am burning - kind of all over.. So, There have been so many things happen since November- in regards to my health- and the ear and tooth- and now body burning- I don't know. I ordered a book on Amazon- called
When You're Sick and Don't Know Why: Coping with Your Undiagnosed Illness.
The woman who wrote it had Lyme Disease for 6 years before a diagnosis was given to her.
I wish I could say that having a diagnosis of bipolar didn't make a difference, but it does.
Sitting or logging into the computer for much time at all makes it all worse.. and just wanted to let you know what happened at the neuro's office.
He didn't mention an MRI- but maybe if the blood work shows something or doesn't? He will.
It is a bit hard to sit here right now- but when I get labs back, I will keep you all posted and thank you.
HUGS-
beekeeper
Beekeeper!
I was just about to send you a message to ask how it went. You have been in my thoughts.
I know you didn’t get many answers but at least you now have somewhat of a path forward. Ordering the book is also a positive step…you want to get better!
I hope the trileptal works for you in some way to diminish pain because pain revs up all the other systems and it is hard to get a clear picture.
Yes, I know from the experience of a childhood friend of mine with Bipolar that it is very hard to get anywhere medically when you have that tag. As if people with bipolar (and especially when then they have been misdiagnosed) don’t get other illness. Defies logic or compassion.
Message me again if you need to.
XoBellalarke
That is what he said to me yesterday. My facial pain- will be in the roof of my mouth- my left temple- sometimes the entire side of my left facial area-- and like you- my tonsil. He said he didn't think it was TN b/c it won't bounce around like this... My face itches sometimes w/ this too- on the left side.....
After you mentioned the orthodontist, I am hoping to get funds to see one and get one of those large x-rays.
I wonder many days- if that root canal was even needed... It was done in late January and has never settled down... It is frontal tooth- first molar- left side...
I wish, frankly, I could simply quit talking about the pain- It's driving my family mad- but I keep trying to sort it out in my mind, and I just can't.
Thank for for your information. When I get my labs- I will ask him about this-- Sometimes, the pain will even be in the left side of my lip... wild monster, if this is TN.
Thank you-
Beekeeper
shindig said:
Beekeeper, I was back and forth even with my good neurologist, at times he said it wasn't TN, a lot of symptoms were considered "atypical cranial facial pain" and at a few different points he said it wasn't TN, then after going down a path investigating something else he'd bounce back to say it has to be TN.
But my symptoms moved around and changed as they progressed, from gum pain to the roof of the throat by my tonsil, forward to the back of the sinus, my eye and cheek, up the temple, pretty much everywhere along the nerve at one point or another...
For me, the surgeon said the MRI was what helped my case the most because my symptoms wouldn't normally qualify for MVD on their own without the big compression visible on the MRI. But it's just one of the many tools and I had 3 of them with and without contrast before getting to a surgeon. I was beginning to think it was a waste of time and money.
Hi Bellalarke <3
It does seem as the pain in one area kicks in- my body kind of goes into pain-shock. Maybe this book will help _some_- at least in dealing with it all until I get an answer.... praying for this...
Your friend is very correct-- once you are "tagged" w/ bipolar, it is so much easier to tell a patient the pain is psychosomatic- "stress-induced." I suppose it is like my sister has said though- doesn't matter if it is TN, root canal, psychosomatic- the pain should be treated- until the cause is found.... I agree w/ this. I have no quality of life right now...
I don't know if the "itching" - can come from TN-- . The pain is left side- itching- left side-... It even causes my eye to itch.. I also don't know much about trileptal and pain control.
Sometimes it's difficult to shove the "fear monster" back into the closet- when there are really scary things like osteomylitis.. (sp?)-- . I will be glad when that book gets here. I told my psychiatrist- even I were the biggest hypochondriac in the world (which I am not- lol)- even hypochondriacs get serious diseases. I also told him that if this has now turned into a situation where my docs don't believe I can develop a pain condition or sickness, this is a very precarious situation. He had nothing to say to this...
Thank you for writing and keeping me in your thoughts.
I've met some very nice people here and am very grateful to have met you all.
I wish I snag a few people who post here and take you to my next neuro visit. _smiles_
((hugs)) - beekeeper
Bellalarke said:
Beekeeper!
I was just about to send you a message to ask how it went. You have been in my thoughts.
I know you didn't get many answers but at least you now have somewhat of a path forward. Ordering the book is also a positive step...you want to get better!
I hope the trileptal works for you in some way to diminish pain because pain revs up all the other systems and it is hard to get a clear picture.
Yes, I know from the experience of a childhood friend of mine with Bipolar that it is very hard to get anywhere medically when you have that tag. As if people with bipolar (and especially when then they have been misdiagnosed) don't get other illness. Defies logic or compassion.
Message me again if you need to.
XoBellalarke