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tingling lips and tongue

Apr 09, 2008 - 9 comments

Sorry about the lack of posts and activity. Just been busy with work, very down and depressed. Just really worn out. I had a spinal tap Monday which is another story but I have a wait of three weeks to find out if any thing comes back.

The thing that is making me wonder right now is the tingling in the lips and tongue. I noticed this a few years ago around the time I would get hungry or eat. I thought maybe it was a blood sugar related symptom but doctors have told me that this is not a blood sugar related issue. I've tried googling it and neurological symptoms keep coming up, either that or low blood calcium.

In any case, the MRI came back normal so it's hard for me to think that there is something neurologically going on when I've had two MRIs in the last year, both which are normal. But I have the tingling in the lips/tongue, the other night I was headed to bed and suddenly I got almost like TV "snow" over my vision and slowly blackness started to come in from the periphery until there was a pin hole of light and then my vision went completely black. I didn't pass out but I felt dizzy and my head started to throb. I couldn't see so I stumbled forward to the bed (which I was only like three feet from) and laid down. After a few seconds, my vision gradually came back from the blackness. I don't understand this ... it's happened a few times over the years but it's not ever been something I worried about (not sure why I never worried).

I'm quite sure every thinks I'm insane. I spent 6 our of 9 hrs at work crying. I'm at the point where even simple things that aren't upsetting or overly joyful make me weep. The slightest hint of stress and I start bawling. An especially rude co-worker called me a "cry baby" the other day and that hurt but I just said "yeah, what of it".

I'm really start to think I'm loosing it. My guy in CA made me promise yesterday that I wouldn't do anything self harming b/c he's afraid I'll get so depressed that I'll cause myself harm. I have promised to not do that but certainly, I'm really down. Every day I feel more and more out of control and more nuts. I just want to give up and let it go. Suffer in silence and not see any more doctors. I feel like a loser. :-(

My head is hurting and my lips/tongue are still tingling. This drives me insane. I can't figure out why this is happening. If I have another dr or nurse say "that's impossible" b/c my tests come back negative, I'll scream. I can feel it, isn't it real? Maybe I am insane.

- k

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by blinky68, Apr 09, 2008
Hi Kimbykat
Stay strong, we have a long way to go in this life. I suffer with excessive binking and when I stress for anything my eyes lock shut. The doctors tell me that it is stress. I have been to five different eye doctors, health care proffessionals and a neurologist that all tell me it is stress.
I am seeing a therapist that has helped me the most. She turned me on to a program with some tapes and work book for anxiety and depression. (It helps) I have more anxiety than depression, but the more I listen to the tapes I realize that depression is there. Sounds like you have severe depression and if you are not seeing a therapist to help you through; get into some kind of a talk group, or at least stay active on this web page to pull you through. I am not a proffessional but I know for me the more I talk about things, the more I listen to myself and hear what my problems are. That is the only way that you can work through depression and find out what is bothering you. I am sure that you are not going insane, because as hard as this is for me (and sometimes I just want to give up) I know that I am not insane! people at my job think that I am. I walk around all day in super dark sunglasses so that no one can see my eyes and sometimes I stop in my tracks and have to wait for my eyes to open. Don't ever give up, my next stop will be to a accupunture doctor, oh and get a massage, that is all about you, you are important, special and lucky that you have a boyfriend who cares for you, that is worth fighting for. Best wishes to you.

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by Quixotic1, Apr 09, 2008
Kimykat - First, the things that you are describing very much sound neurological.  A negative MRI DOES NOT rule out neurologic problems.  I had a Normal MRI (not!) for two years before I got my MS firmly diagnosed.  What you are describing is also clearly a major depressive episode.  I want you to seek help and some treatment for this.  Only by getting the depression improved can you begin to deal with your other symptoms.

Tingling aound the mouth always makes doctors think of hyperventilation, and anxiety and stress.  While I can't say that isn't happening, I wanted to ask you about the tingling.  Is it in both side of the lips and tongue equally?  Or does is it a little more on one side, or does it vary?  

The episode of you losing your vision could have been a near-faint - common in young woman.  I had them.  Or it could have been a migraine.  Either way, they aren't dangerous.

Two years ago after being told by my most esteemed neurologist that I was a psych case faking symptoms to get medical testing, I too swore off of ever going to another doctor with complaints (and I AM a doctor!)  I slipped into a really severe depression.  So, I know where you're at.  You can read my story on my profile.

Stay with us all, make sure you see someone asap for this depression, because until you get some treatment for it, the rest of the symptoms will be unbearable.  You can answer some of my questions, if you want by Private message.

I hope to hear from you,

Quixotic1

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by kimbykat, Apr 10, 2008
My doctor also said they sounded like neurological symptoms. She sent me to a 4th neurologist who I have been told is good with "challenging cases" and is known to work hard to crack mysteries with patients. I really hope so b/c I just ... every time I hear that the test revealed nothing and they don't know what to tell me other than to give another scrip, it just devastates me.

I do realize that I'm at a point of breaking. I contacted my EAP through work and am going to get referrals for a therapist that deals with these types of issues. It's not just being in bad physical condition, there are other things that are really getting to me but at this point, I can not cope with any of it. I spent hours crying Tuesday. I cry even when I'm not really that sad and it makes no sense. I just laugh and say "excuse the crying I can't help it".

The tingling is through out both upper and lower lip, I would say the whole tongue and I noticed a weird sensation in my gums. I thought I had a dental problem but my dentist indicates that my bones and teeth are healthy. I just needed a filling which was good for that tooth but some times I still have a weird feeling in my gums. The tingling/numbness in the lips/tongue seem to happen when I'm really hungry or when I've just eaten. I've never noticed any heightened sense of panic or unusual breathing with it. It lasted for 15 minutes the other night and then went away. I did notice a pressure head ache with it. It doesn't really vary, it's pretty much the same every time. I always figured it was my blood sugar since it seems to happen around hunger or after eating but my mom who is a diabetic said she's never had that happen to her. Also, everyone says that does not sound like blood sugar. I let it go for years b/c I really thought it wasn't anything weird, just blood sugar. Now I'm wondering if symptoms I've let go for years are actually part of something.

The blacking out thing has happened before but it's rare. I did have a slight headache then too but nothing horrible that I remember. I have had the thing w/ the "tv snow" across my vision for years too but it's not so bad I can't see so I just let that one go too. The thing that really started to bug me was my vision getting blurry, the floaters in my eyes and the pain. But everyone just says that I'm straining my eyes, the floaters will go away b/c my brain will get used to them and no one understands the pain in the eyes ... so they drop it.

I really feel for you, I would be devastated if a dr told me that. So far, my dr has said she thinks I'm perfectly sane but just stressed and that we will find the answer if we can. She said we may never know but she will try to help. I'm glad that you were able to keep at it and get your diagnosis. I would hate to see some one wait for years to find out what's wrong but I've met and talked to a lot of people who have suffered for 10 or 20 years with a multitude of things w/o getting a diagnosis until they had some sort of organ failure or other issues.

Thank you for reading and responding Quixotic1. It's so hard to push forward especially when you think that people are judging you and treating you like an idiot. I'm sorry you went through that with that dr but I'm glad that you now know what's going on with your body. Any input you have, I'm happy to hear. I just want to get better. I keep thinking that I love my guy in CA and some day, I want to marry him and have children. I fear that if this continues w/o treatment, I will hurt too much to chase after a toddler. I'm afraid that my quality of life will not improve and that my dreams will go unrealized. I want so much to have a normal life and feel good. I haven't felt good in so long it seems.

I'll stop babbling. Thank you a million times over! God bless you for your response.

hugs - k

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by kimbykat, Apr 10, 2008
Blinky68:

Thank you for your response. That sounds like a very difficult condition to cope with. It seems like if it were just stress, it would eventually get better or go away. I hope that accupunture is helpful for you. A lot of people have suggested it for a mulitude of things and I hear it's very good. Hopefully you will let me know or post if it is helpful!!

I am going to seek a new therapist. Mine was nice but not effective at all. We never got anything done, she babbled a lot, God bless her. :-) I need to see some one who can actually help me stop the chaos in my life and do something effective for me. I'm hopeful that I'm able to work it into my schedule of drs and tests. At this point, my employer has used all my vacation time, all my sick time and now I am on unpaid time. They screwed up the vacation/sick time but I didn't want them to go back and give it to me and then take it all out of my check. At this point, I can't even visit my family in TX and relax. Everything feels like it's so hard. It's like trying to walk through a pool of jello and getting no where.

You and Quixotic1 are right. I need help. I can't do this on my own and it's silly for me to keep insisting that if I just push through, it will get better. I need some serious talk therapy and real person to person encouragement. I am very thankful for the forums here and everyone's good vibes, prayers and input. Otherwise, it would just be me by myself ... some times an encouraging word from my boss and my guy. It's one of those things where everyone gets uncomfortable and no one knows what to tell you. At least w/ a therapist, they are trained to know what to do.

*big hugs* Thank you, I hoep you're able to get resolution for your condition and I will keep you in my thoughts. It seems that no matter what our unique symptoms and conditions are, we are able to understand each other. I can't even say how helpful that is.

I will try to be more active on the forums and post more. I just get so depressed that I'm not able to do anything. Right now I am writing from work. I should probably eat my lunch!

hugs - k

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by JustBecause1903, Apr 10, 2008
Hi Kimbykat (did I spell that ok God my memory is shot to pieces lately)

Sorry if this has already be mentioned but I was just looking up about B12 deficiencies and I'm sure that mentioned tingling lips and tongues. You've probably had a blood test to rule this out, but as I'm new on here I don't know all the history.

Also I swear by Dr Bach's rescue remedy for stress and feeling depressed, especially when I'm being told it's all in my head! You should she your doc though.

I had Transvserse Myelitis in 03 recovered, but am having a blip now that needs further investigation, I'm just waiting to go into battle as the neuro that I've just seen is suggesting it's psychosomatic.

Best Wishes.

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by Jj792, Apr 10, 2008
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=forum;f=1

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by kimbykat, Apr 11, 2008
JustBecause1903:

I'm pretty sure they would have tested for B12 deficiency but I'm not sure. They've assured me they've tested for just about everything. I did ask them to test for either Lymes or Lupus (I can't remember which one they said they would test for w/ spinal fluid) and they said they would check it out.

The Dr. Bach's really works? I've always been skeptical about those mouth sprays. I guess trying something new couldn't hurt (well maybe, who knows). I've been taking Wobenzyne lately in the mornings. I haven't noticed any pain decrease or any effects.

Transverse Myelitiis sounds awful! I had not heard of it before but I knew there were many different de-myelinating conditions out there. I'm glad that you have recovered and I hope that the blip you speak of isn't a re-occurance!

I'm starting to see a very frequent theme of doctor's suggesting that people with some very painful and unsettling symptoms are "somatoform conversion". Obviously there are many people who have been accused of that only to find later that they have a very real illness. Very upsetting.

I'll have to ask my dr about the B12 deficiency. I notice the tingling of the lips/tongue happens mostly in relation to food. Either being hungry or just after eating. I was having some strange sensations in my gums. *sigh* So strange.

Best wishes to you dear, I hope the current "blip" isn't a return of the myelitis and that things improve. Take care!

hugs - k



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by beck748, May 30, 2008
Hi there,

I stumbled to your post inadvertantly and read about the TV snow in your eyes.  Something happened to me just like that 1.5 years ago.  It was called an Ocular Migraine.  

It started when I was sitting at the kitchen table writing out checks to pay bills.  It was a sunny day outside and the sunlight was coming right in through the window next to me.  All of a sudden in one of my eyes I saw a blind spot, like what you see after you have a camera flash in your eyes.  I expected it to go away and it didn't.  I thought it was from the sunlight, so I closed my eyes and covered them with my hands to my eyes would adjust back to normal and they didn't.  Instead it got worse and spread to both eyes.  I got scared that I was having a stroke or something and called an eye doctor right away.  He said if it didn't go away in 15 minutes or so to go to the er.  Of course I started to get more frightened and then my peripheral vision on both sides just went away.  I couldn't see on either side of my and the blind spots remained.  My husband and I decided to go to the er, but along the way, it seemed to start to improved.  The eye doctor was along the way to the er and so I called him, explained what was going on and asked if he could see me.  I got lucky and he said he could. By the time I got there, I was pretty much back to normal.  He examined me and told me that my eyes were perfectly fine and what I had just experienced was an ocular migraine.  He told me I could expect a dull headache afterwards and I told him that while I was sitting in his chair, I started to get one.  He said:  Yep.... that's an ocular migraine.  I have no history of migraines of any sort though my sister gets them from time to time.  He said, I might get one again in the future and that I might never have one again.  He said they are nothing to be concerned about and just take some tylenol if it happens again.  I did have another one about a year later.  Much less frightening and it lasted a shorter amount of time.  I wouldn't ignore it incase it is a symptom of something else.  I don't have any reason to believe it is, but at the same time, I shouldn't encourage you to ignore it either, but if it gives you any peace of mind to know that there is a name for what you had and it's not in itself serious, then my post was worth submitting.

Becky

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by nonatin, Sep 26, 2008
Kimbykat-

Sorry it took so long to respond to this. I hope you caome back to these posts to look for an answer. Better yet, I hope you have already resolved your problem. If not, here is your answer:  You are dehydrated and your electrolytes are imbalanced. Don't drink sports drinks, as they are full of sugers. Start out with pedialyte, 3 bottles daily. Sip it, don't chug it. If you live in a dry climate, get a humidifier and use it daily, particularly on the really hot days and at night when you sleep. If you have chronic diarhea, find the cause and fix it. Drink at least 8 glasses of water a day after your electrolytes are back in tune. Good luck!

email me if you have any more problems,   ***@****

Toni

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