Well...hmmmm....the newest health update

Well, two doctor's appointments today- allergist and new family doctor.

Allergist was fine. I thought FOR SURE I was going to have some sort of food allergy but after lots of pokes and scratches, no such luck. We talked about food preservative and additive allergies and as of now there is no test for those. He said the best way is to eliminate something like MSG from your diet and see what happens. I also had read about people who do not have Celiac's disease, do not have a wheat allergy but remove wheat from their diets and get better. He said that yes, that does happen but often their physical symptoms are different than mine. He said that if I wanted to do a wheat free test trial, I would need to be sure that was all I was doing so we would know if it was really working or not...no oral drugs, no topical creams, etc.

He recommended seeing my pariodontist or oral surgeon for a consult and possible biopsy and seeing what that looks like.

While I didn't get any answers, I felt like I could cross something off my list.

This evening's appointment was AMAZING!!!! I've said it with two other doctor's in this process...it's just the way they make you feel from the moment you walk in the door that matters- not what they say. This doctor, along with my GYN specialist and my chiropractor have been my angels- my rays of sunshine in my cloudy days.

Tonight was a new family practioner. Someone in town with a new fresh set of eyes on this who also has some experience with Lichen Planus. We started at the beginning with my carpel tunnel symptoms and chronic neck pain for years all the way up to today's allergy appoinment. She listened, she took notes, she asked tons of questions, she reassured me that we were going to DO something about this.

My symptoms- currently and even in the past do not indicate Lichen Planus to her. While she's not quite ready to take them off the table yet, she just feels like that might have been a hasty diagnosis and while she doesn't disagree with the Prednisone as a treatment, it didn't work and now it's time to move on.

This chick, Dr. Marty, is a naturalist and believes in really listening to your body and instead of feeding it with medicines and masking the problem for awhile, digging deeper and trying to heal from the inside- only using medicines if truly needed. That's what I needed to hear as I just can't keep putting more "stuff" in me.

Luckily, she believes the carpel tunnel, the neck pain and the joint pain are all related to a neck injury but are not related to this mouth stuff. That's good news. She does however, feel that the initial trigger to both things goes way back to two years ago after Mara was born and my sleeping habits and positioning changed.

Amara was born. I hardly slept. She had colic. I held her 20 hours a day. I started having Carpel Tunnel numb hands while sleeping. I tried changing positions and wearing braces. My hands got a bit better, my neck got worse. I hated my new positions and tried new things. I didn't sleep. I wasn't rested when I was sleep... I'm always tired. She believes the over-exhaustion and inability to get well rested sleep ( because of the pain or positioning causing the pain) triggered a response in the body- for me in my mouth. She is calling in Burning Mouth Syndrome.

Burning Mouth Syndrome is a real thing and you can google it. What you'll find is a very frustrating condition as it basically is BURNING MOUTH. Little visible symptoms, little rhyme or reason. Little treatment. Some doctors believe it is an auto immune disease ( an immunal response to a trigger) while other's believe it is a nerve system response. A trigger causes an overactive nerve condition thus the very inconsistant symptoms and burning. hmmmmm...I know, I'm still chewing on it too.

So, let me back up a tiny bit. While we were talking about joint pain and my full body symptoms, we talked about MS and specifically Fibromyalgia as a possible concern for me. Fibromyaligia is a good example she said. It's an auto-immune disease but what it really is overactive nerves always on high alert at your joints that cause tremendous pain and discomfort most of the time. She describes Burning Mouth Sydrome as Fibromyaligia on a tiny scale,only in your mouth. Your mouth's nerves are on high alert and over overprogrammed and over sensative all the time. Mostly without warning and always without conditions- it just does it. Our job is just to find out how to calm them down and make them happy so I can function. THis does not mean I have Fibromyalgia or ever will. If it is BMS, it's just a way of describing it.

So, we are getting a bit for blood work. A few more vitamin dificiencies to look at and some little test they do to see if you are currently having an immunal response manifesting as in inflammation in the body ( diagnosing some sort of auto-immune). This result may not diagnose me but may be able to take LP off the table for now.

No more vasaline. While it may feel good, her thought is why put a product on your mouth that comes from the same product as gasoline. Agreed. I'm switching up and moving to straight Vitamin E oil for my lips. On the run I'll continue to use my Lanolin. No more toothpaste with pretty smells and chemicals- chemical free/all natural toothpaste.

Vitamin B6 and B12 help with nerve health so I'm going on that. Also beginning to take Vitamin D suppliment and Fish Oil. She says some people feel better overall on fish oil in just days!

It will take 6 days for my blood work. We set an appointment for 2 weeks from tonight. THe play- start new lip therapy. Start vitamin regimine. Remove as many chemical contacts with my mouth as possible. Get back to a base line. See what happens. Pay attention to when my mouth burns. Write it down. At our next meeting, we hope my lips will feel better as will my mouth. If not, we move on to something else. PErhaps a Wheat free diet. Perhaps more testing. Perhaps a skin biopsy. Who knows.

Again, I don't have answers and honestly, it's all getting more confusing as I go but I feel like I have someone on my side and I need it. The last few days have been challenging health wise. I haven't been feeling as well and I'm not sure if its because I'm now OFF of Prednisone or if it's because I'm having a flare up or just because I'm crazy. Having a plan and list of things to do over the next week makes me feel better and that's what I need right now- reassurance.

Please still keep me in your prayers and hope we find some treatment that works soon- we may never find the answer but just something makes me feel better would be nice.