posted
Ok, so ya'll can call me crazy all you want, I'm an optimist. After years of torture and spending more $ than I care to remember, I've just been diagnosed with Lyme Disease. I understand that it's a horrible and poorly understood ailment, but it's still progress over not knowing what's wrong! (Or being told that I have Shy-Drager syndrome, which is fatal.)Having a label and treatment options is WONDERFUL.
Ok, my first question. Has anyone else here had a numb face? Not Bells Palsy, with one side of the face numb, but bilateral numbness. No drooping, either. Mine actually started with my tongue, spread to roof of mouth, then all of face. Some days affects my ability to speak, swallow, really bad days hard to breath. Comes and goes, it does seem days that it's worse are also days I'm the most brain fogged- maybe not enough blood to the head? I can't seem to find reference to facial numbness anywhere.
Thanks! T
------------------ Vincit qui patitur: he conquers, who endures. -- Percy Cerutty
Posts: 91 | From Atlanta, GA | Registered: Jan 2005
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posted
Hi Trillian, Welcome to Lymenet! I had/have the same outlook you do, you can't fix it if you don't know what's causing the problem. I was SO grateful for my LD diagnoses. Unerved at first? Yes, I cried but then I cried when they said I had Lupus . . . I don't care whatcha call it . . . I am so much better that I FORGOT about signing in on Lymenet to see what's going one for at least ONE WHOLE MONTH!! I lived on Lymenet before that and couldn't imagine a day w/o it.
I don't relate to the numbness you are talking about but if it was in your lower legs they would say it's "Raynaud's Syndrome" or some other autoimmune disease name they have. I had difficulty swallowiing earlier on but it's increasingly better.
The brain fog is really gone, especially when I am well rested and the insomnia is easily controlled by melatonin. I have been under treatment for almost 3 years. I currently am on abx, no sugar (I cheat occassionally), no carbs and a ton of supplements. My Dr. is in PA and is awesome. I am off of my ADHD and Bipolar meds and my psychiatrist agrees I am fine w/o them.
I wanted to share with you how well I am because I believe you too can work towards that with a diagnoses. This bacteria takes about 18 months to turn the 1st serious corner of wellness. On the way to that 18 month mark you will have good and bad days but sometimes even the most stubborn of symptoms will eventually disappear.
posted
Hey Trillian, yup, I've got the facial numbness.
Started 3 years ago after a bout with bells, then after bells subsided, my entire face began what I thought at the time was numb. After a while I began to realize that it wasn't numb, but the opposite, feels numb, but it was over sensation. Feels like a real tight sunburn.
Many meds later it hasn't gone away. Last March I started with crawling sensation in my left knee, which then spread to a sensation in my left foot and hand, in November it started to spread to my upper back, and now it has gone over to the right side. Latest symptom was the tip of my tongue. I saw a great specialist in ny 2 weeks ago, he specializes in pereheral neuropathy. I am awaiting diagnosis. I suspect CIDP (chronic guilliane barre)But we'll see.
also look up trigiminal neurologia on the net, kinda souns like that.
Hope yours doesn't spread like mine, but be aggressive in getting help.
Posts: 55 | From Maine | Registered: Jan 2005
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posted
Thanks for the replies- and Curly, thanks so much. That's just the boost I needed.
Posts: 91 | From Atlanta, GA | Registered: Jan 2005
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I had Bell's Palsy (BP). Now that my face looks normal again (and people think I'm all better) I have numbness that comes and goes.
It is all on the side the BP was on. It mostly affects my eyelid, nose, back of nose, tip of tongue and upper lip. I can't always feel cold (like if I touch my cheek when my hands are cold). Sometimes when I'm out in the cold it feels like my eyeball is numb too and doesn't feel the cold weather.
It's cold here in Boston these days. If I don't wrap up really well, the most affected part of my face gets cold and my symptoms get much worse. I wear a hat with earflaps, sometimes with a headband underneath, a scarf and a neck gaiter pulled up over my jaw & chin.
My neurologist says that the cold slows down the nerve impulses. Since they were already very slow because of BP they get noticably slower now. He said the cold does not cause damage. h&s
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.
( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test. ) See this ( . )thats the size of the larva stage tick... Next nymph size... ( * ) Next is adult ( o ) to ( 0 ) Pretty small????? HUH
posted
Numbness has happened to me several times, not always in the same place, although once it was on one side of my face (without bells palsy). I am assuming that since lyme gets in nerves and you have nerves all over the place, you can have neurological symptoms in various locations.
Posts: 8430 | From Not available | Registered: Oct 2000
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It was this December when I noticed that something was wrong. I got a seizure like attack (just severe pain in muscles that made me go rigid for 30 minutes). During that time my right side of my face went numb and the vision blurred in my left eye and then came back in. Since then, my hands go numb from time to time. Just sitting here waiting for Western Blot to come back. Some days are good and then others are not. It really scared me when the numbness started. I didn't know what to make of it.
posted
Yes, I have the same thing. I just got diagnosed too!! Yippee! At least I can treat this.
Both side of my face (cheeks and mouth) go numb at times. I did this off and on for 3 months. Now the lyme seems to prefer the left side of my body to attack.
Woke up the other morning and felt like I had just had a tooth filled (no face drop though, just numb). I'm gonna be ticked (ha!) if I get a bill.
Sometimes I feel like there are little gremlins running around my body attacking with jack hammers.
good luck!
[This message has been edited by jmardis (edited 31 January 2005).]
[This message has been edited by jmardis (edited 03 February 2005).]
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