Frustrated and hoping to get answers/help

[KarenNadine]

Hi :)

I have been having a horrible numbness, tingling sensation on my face on and off for the last couple of years.  Recently it is happening more often and lasting longer.  I get shortness of breath in as much as I keep having to take deeper breaths as I feel like I am not getting enough air in my lungs.  My vision feels "squiffy" in as much as I can see but it feels weird.  I am dizzy and lightheaded all the time and I feel like a weird pressure in my throat, almost like someone is gently squeezing my windpipe.

I went to the doctor in June and she just fobbed me off saying it is anxiety.  The thing is, I am not an anxious person at all.  I am in a happy relationship, no real major life issues.  Great kids etc etc.

I do have high BP but that is under control with meds.

My memory lately is terrible also.  My kids joke that I have early onset dementia.  I am a 42 yr old female.

I went back to a different doc this week and told him if he agrees that it is anxiety then medicate it as I am going insane.  He wants to refer me to a neurologist for tests so at least he is listening to me.

Do any of you feel like this?  I am nervous about ms but to be honest just want someone to tell me what the heck is wrong with me.  I am starting to feel like a hypo :( but my symptoms are real and frustrating.

Thanks for you advice.

Karen

[Alderica]

Yes, I live in Germany these days but I come from the UK originally, and all my GP ever said was "Let's wait and see if it clears up by itself" *sigh*

[KarenNadine]

Thanks again guys.   No I havent seen a ENT specialist, it is hard here in the UK to get your GP to listen to you (this is my experience anyway) and everything seems to be put down to "stress".  Drives me nuts!

Bigmistake:  I totally understand about knowing when your body is off.  I am a runner and I am usually quite healthy.  I know these feelings are real but I think my other half thinks I am being a drama queen.  Today my right arm feels heavy and tingly.  This is new.  

Good luck with your MRI and EMG next week, let me know if you get any answers.

[bigmistake82]

Hi Karen,

I have some similar issues going on with my throat...it feels tight and dry.  I also have some occasional pain when I swallow.  My ENT said I have inflammation possible due to a virus, but I have many other symptoms like brain fog, weird vision in my left eye, my ears ring from time to time, I have muscle spasms and weakness.  I don't really notice extreme dizziness, but my senses are definitely off.  I have also notice heart palpitations...I'm actually wearing a holter moniter now due to an abnormal EKG.  Plus did an echo and stress echo to rule out a structural heart problem, but I'm pretty sure my symptoms aren't due to a cardiac problem.

I visited my Neuro for the first time yesterday.  He did a physical exam, ran blood work, and I'm scheduled for an MRI and EMG next week so hopefully I will get some answers soon, but I'm not counting on it.  My wife thinks I'm crazy, but I've been an athlete my whole life so I know when my body is off.

I hope you will feel better soon!

[Alderica]

Have you seen an ENT specialist to rule out inner ear causes for the dizziness? It took me 15 years to get diagnosed with vestibular neuropathy, because I had none of the typical symptoms or history except for dizziness - thankfully I encountered a doctor who had more time, patience and determination than any other I'd seen; the others just said it was "psychosomatic". I know the tingling doesn't fall into the inner ear category, but it would certainly be a good idea to rule out anything like Meniére's, BPPV and so on.
Feel better soon *hugs*

[KarenNadine]

Thank you for your comments and replies.

I have had so many blood tests, everything comes back ok as far thyroid.

I had a slightly irregular ECG last week but my gut is telling me this isnt cardiac.

I am soooo dizzy that I cant drive my car.  I feel like the ground is moving or like I am on a boat.

I am not an anxious person (although these symptoms are making me feel frustrated and anxious).

As I sit here I am dizzy, my face is tingly/numb.  I feel like someone has their hand around my throat and is very gently applying pressure.

Could these symptoms be cause by a trapped nerve in  my neck or something as simple as that?

I have had this on and off for 2 years but it usually comes and goes.  I have felt this constantly for a week now.  I am so frustrated.

Its nice to have a place where people dont think I am crazy.  I think my family thinks I am a hypo :(

x

[twopack]

I can remember several of us here (including myself) voicing these same complaints or a variation that includes some combination of them.  I can't recall anyone who has had an adequate explanation of cause despite suspician and testing for cardiac disease, GERD and thyroid.  Sorry, I know THAT isn't what you what to hear!  

My personal recent experience occurs during at least part of every day.
I most often have:
Tingling of my tongue (R>L), lips and lower jaw.
Intolerance of my hair or glasses touching my face.
Feeling of fullness in ears (R>L) and under jawline.
Feeling of steady pressure over my throat at Adam's apple level.
Feeling that air is getting trapped in my lungs or is hard to push out.

After testing negative for heart problems and having successful past surgery to repair GERD origins it seemed new blood work would point toward a thyroid cause.  The TPO antibodies have been elevated lately so it's not so clear at the moment.  Guess I'll wait for the antibodies to align with the symptoms and for jupiter to align with Mars.

I suggest this would make a terrific home base for sharing if any of us gets a clue to what's actually going on.

Mary

[sllowe]

KarenNadine,

Welcome to the forum. It's symptoms like this that can hop you up and make you anxious. Sometimes it is the other way around, but I'm one that it happened to - too.  They are simply scary, you can't control them, and they are unlike anything you've ever experienced. When they come out of no-where it's worse.

You did the right thing by telling the doc to give you something if it was stress or anxiety. Surely they should get the feel you want this to go away. Anxiety can be cured for many - as for MS, there is no cure - so you don't want that. Take the pills and see how you feel, at least you'll know 1st hand if it makes a difference.

Question for you.... Have you described the difficulty in breathing to the doctor who controls your Bp?  Meds can cause these things too.

If this turns out to be stress and anxiety, please don't ever feel hypo! It's happens to all of us at some point in our lives. Or, if it's something else, we can help you with that too.

Regardless, what I found to help me through those hours of the day was to steer clear from loud noise, crowds, action (including tv programs) - everything that causes a rise in adrenalin by good or bad means. For some reason with me, I couldn't even hear people laughing. Had to stay neither here nor there if you know what I mean.

Hope this helps, and I hope your doctor is willing to work for you and get to the bottom of this :)

Thanks for coming our way,
-Shell

[KarenNadine]

Thanks Deb,

I appreciate your reply.

I was tested for MS in my 20s when I lived in the States but the MRI came back negative.  I am now reading that this can happen.

I have been tested for anemia and the bloods all came back fine.  I dont think I am allergic to anything but have never been tested.

I dont get shortness of breath (didnt describe it right) but a feeling of I cant get enough air in my lungs, like I need to breath harder but cant do it. I also get chest pains but all cardiac tests come back ok.  Could this be a MS hug as you call it?

I just want an answer.  It might sound weird but if a doctor told me I had MS I think I would be relieved because I am feeling like a hypo/whack job but I know how I feel and the symptoms are real.

I am ranting now :/  Sorry!

x

[Deb61]

I know the frustration all too well!  I went for years not knowing what was wrong with me.  

The facial numbness symptom can be related to a neurological problem like MS, but they can also be caused by other diseases and problems.  The forgtfullness sounds familiar, but MS has several mimics.  It's good that you are being referred to a neurologist because that person can help figure out what's going on with the cognitive issues and the facial numbness.  

The shortness of breath problem doesn't sound like MS; however, sometimes people with MS will have pressure in the chest called MS hugs, but it isn't typically related to shortness of breath.  

Have you been tested for anemia?  When I was anemic, I remember having shortness of breath.  Plus, the obvious, heart or lung problems can cause this symptom.  

I do sometimes have throat issues--tightening of the throat.  This is a common symptom in anxiety, so this is probably why your doctor is thinking it could be anxiety related.  

Just curious, but when I think of throat constriction and dizziness, I think of a relative that had a severe allergic reaction to a food he ate.  Have you ever been tested for allergies?  

When the brain is affected sometimes this will cause all sorts of really weird symptoms, so you really can't rule out neurological problems--especially with the facial numbness and cognitive issues.  It's best that you get an opinion from a neurologist.   Cognitive isssues sure do cause me a lot of distress!  

I hope the neurologist comes through for you in figuring out what's wrong!  

Deb