real or not?

[nicobella]

Hi there. I am a 31 yr old female. My major complaints for about the past year have been vertigo/lightheaded and headaches/sinus pressure. I also have this overwhelming constant feeling or fear that I am going to pass out...go unconscious...or have a seisure or something worse. I have been to an endo, neurologist, internist and ENT.  I have had an MRI of the head and neck with contrast. BOTh normal. I am still waiting to go for my balance test. I was diagnosed with hyperthyroid last April but have been off meds since last August and levels have been stable. The vertigo is really bad some days and then others it is bareable. However it is always there to some degree. I am not sure if the dizziness is making me think i am feeling lightheaded, going to pass out or have any of those other fears i mentioned above OR if i really am feeling them and could possible happen. I also was anorexic/bulimic for about 10-12 yrs. Been in remmission from that for about a year. Could the purging have caused a brain or neuro problem?? Is that possible? All the doctors tell me It is just anxiety but i don't see how i can have vertigo ALL the time if that were the case. I forgot to mention that i also have floaters and extreme brain fog (or detatched vision). I am really feeling like I am going crazy....!! Can there be something else neuro going on that the MRI would not show??
thanks.
Melissa

[elizabeth123]

These are my exact same symptoms!  It is so reassuring to know that there are people that feel this way too.  About one year ago I hit my head on the door in the middle of the night and I did not pass out but the next day I woke up with horrible dizziness.  I went to the doctor and she said that I have vestibular neuritis but then come to find out I went to an ENT and he said there is not way you can get that from hitting your head.  I had an MRI and everything was normal.  I then one month later was so freaked out that I went to the ER and had tests, blook work done and a CT scan.  They found nothing.  I have been to a otoneurologist and had 3 tests done (eye movements, water, etc.) and nothing was found.  My doctor has totally written all of my symptoms off and says I have anxiety.  I know I do have anxiety but I get it after I have dizziness.  It is a secondary symtom b/c I am so scared that I am going to pass out all of the time.  

My symptoms include dizziness, headaches, loose limbs, feeling like I am unreal (this is a really weird feeling)  I feel like I am looking into this world and I am not really here - like I see things really clearly - Does anyone have that?  I then go into a full blown panic attack and freak out b/c I feel like I am dying.  I have the worst brain fog, I am extremely sensitive to light.  I am tired ALL the time.  I know something is physically wrong with me but NO doctors can figure it out.  Could this be anxiety? I have tried taking Zoloft and I too felt SOOO horrible on it.  It gave me more anxiety.  I have tried going the holistic approach recently and went to a nutritionist that tests heavy metal toxicity and hormones.  I found that I have mercury and aluminum toxicity and low adrenals.  Symptoms for all of those conditions are a lot like mine, so I am going to try that route.  I just don't know what else to do.  

Everyone has mentioned so many options and diseases.  I mean how can you be tested for everything.  Do MRI's really show everything or should I get another one?  I just don't know what else to do and I am only 24 years old and feel like I am dying and there is no one to help me.  Every doctor just says I am perfectly healthy, so should I believe that or have more tests done.  Does the ER do pretty extensive tests?  I feel like they do and if they didn't find anything, then maybe nothing is wrong!

[leiza]

I have been looking on the internet for a match to my symptoms and have only found this site. You explain my symptoms to a "T." I too often feel like I am about to go unconscious or have a seizure and I try to do something to distract myself from feeling it or actually passing out. I feel like I get panic attacks from these feelings. A litte into my past. When I was 14 I was diagnosed with petit mal epilepsy. Basically, I would stare and just go away for a bit, no shaking or anything dramatic like that. When I was 19 I got off the meds, and was fine. Now I am 24 and have been having problems again. I had a bad episode when I was driving home (which is the scariest for me) and started to feel like I may go unconcsious, and started panicking and pulled over. I had someone come get me. After that I was put back on Tegretol (anti seizure). Even though I tell everyone that it helped, It really didn't. I feel the same, and still get the scary pass out feelings. I also get dizzy, not along with the pass out feelings. I just sometimes lose my balance while just standing. I'm a teacher, and often get these panic feelings in the classroom, and I really have to concentrate and try not to panic. I hate to be in public when I get them, cause what if one time I really do go unconscious? I 100% understand and know what you mean about feeling like you are going crazy. I think the same thing... if I tell a doctor what I am feeling they will send me "away." I'm so relieved to hear that I'm not the only one that has this, and it's not all in my head. Please keep me up to date on what docs you go too, and any potential diagnosis. Good luck.

[vanityice31]

I have alot of things going on with me and I have been to every doctors and had every test and they find nothing wrong. First of all I have a burning tingling feeling in my left side of my head, then when I get up to walk around everything seems different and I get dizzy and when I sit down my head feels like it weighs a pound. I feel like this all the time, there is no relief for me. My doctors prescribed me lexapro and I am scared to start taking them. I don't want to start taking something that is going to give me bad side effects, because he once prescribed me zoloft and I felt like I was dying and I got so depressed and I called 911. Can anyone explain to me what might be happening and if I should give lexapro a try. I need serious answers because I want to get better and if lexapro can do it I would like to know. I have 3 kids that are counting on me. Thanks

[just_duckie]

Have you had spinal tap?  If so did they tell you your opening pressure?  Your symptoms sound a lot like mine did... I was dx with pseudotumor cerebri (aka.. idiopathic intracranial hypertension).  You would have a normal CT, MRI and labs.  Sometimes your eye doctor can tell you if you have this from a good eye exam (swollen optic nerves).  
Good luck. Mel

[jan]

It was an MS specialist who said it wasn't.  By the time I saw him I didn't have many symptoms active.  He based it on the fact that the 1st MRI showed all 3 lesions and 6 yrs. later I still only had the 3.  I forget the expanation he gave of the lesions (something that had stabilized), but most neuros felt it was demylination.  

Remember I said that my neuro said some of her patients only had one flare?  She considered that mild MS.  When she had seen my MRI she said it was def. an MS lesion.  (None of the neuros seemed to realize the very big spot was actually 3 lesions, it was the MS dr. that pointed it out.  I think if the other neuros had known they would've all said MS, because they were waiting for one more to give me the diag.  That is why I had so many MRI's).  

Sometimes, or most, it's very hard to get the diagnosis right off the bat.  It takes time to evolve.  In that MS group I gave you the link for, many went many years before being diagnosed.

I hope if you have it it is indeed mild.  :o)

[sally456]

who was the one that said you dont have it..and what was the explanation of the lessions?  They are caused by all of the other problems?
in my mind i just think that if i have it..its mild and hopefully will stay that way and ill be ok....
thats how i have to think,

[sally456]

So for you..do you feel lilke you need to keep pursuing the ms thing?
Sometimes i feel that since i really feel ok most of the time..that knowing i have ms will just depress me...and the treatments for it suck!!!  Who wants to inject yourself with toxins.
I dont think my symptoms warrant that...my friend's mom has had ms for over 40 years....she had symptoms when she was 18...she did ok..they didnt have the treatments back then..she was never in a wheel chair.  Some things came and wnet over the years...
But she managed...
I did read somewhere that alot more people have it then are reported...they say that only 400,000 in the us have it but now they think that its over a mil. because everyone seems to know someone who has it and its somewhat of an epidemic.
Where do you live> How old are you?

[jan]

I am 49, so I think I am safe.  Yet, when they say the ages you usually develop it, doesn't mean it is found then, right?  I def. have something neurological going on, but I don't believe it is MS.  My neuro exam is always abnormal one way or another.

You're right about the treatment.  My friend is trying LDN.  I think that is something you do on your own, not sure.  You can look it up, there's a group for it.  I am told it's used for many autoimmune disorders.  I have some of those, but don't want to put anymore into this body right now.  I am taking 11 prescriptions daily as it is.  Yuck!

I follow up with my neuro and an epileptologist, but I am done seeking an answer.  I now believe there isn't always an answer.  When I was diag with MS my PCP said it's about time someone put it altogether.  Now that I am told it's not, back to square one with the exception that I no longer stressed at finding the cause/reason.

Good luck to you, Sally. Oh, btw there is a Yahoo group for MS, they are very nice.  Here is the link if you are interested:

http://health.groups.yahoo.com/group/FriendsWithMS/

[jan]

If some of the above didn't make sense it is because I wrote it to a friend who thought I had MS (she has it).

The neuro said my lesions could still be a problem and my C-spine issues are part of it.  I think that she still suspects MS.  She says some of her patients only ever have one attack.  Who knows.  I just know I am much better today (this year) than I have been for years.  A lot of the symptoms above don't bother me or are infrequent.

[jan]

First, the ones I have been told I have or have had:
spasticity, dysarthria, clonus, myoclonus,  paraethesia,  vertigo, my fav -
constipation;  sleep disorder (alpha intrusive sleep), autonomic nervous
system (the tachy and syncope), my other fav - epilepsy; L'hermittes but just once and it could've
been from neck or ?, neuralgia

What I believe I have:
cognitive dysfunction, I think the jerking when trying to touch neuro's
finger is intention tremor, vestibular ataxia - when my body leans so bad
can't walk w/o Tom exerting force the opposite way by hold'g my hand,
aphasia/dysphasia - but thought maybe seizure?,  speech
ataxia (I blame meds), Uhtoff's symptom (increase in severity of symptoms,
geez that doesn't leave it wide, open does it? :oP ), inappropriate cold
body parts (not meaning the Raynaud's, but my leg was a disgusting
horrible cold feel'g).

Here are the maybes:
I saw the babinski but think neuro did the test wrong.
swallow'g probs off and on(again, now with just sm. stuff)


bdbdbdbdd That's all, folks. ;o)

But I haven't fallen apart yet and I consider myself very lucky that I am not a horse (or else they would've shot me).  ;o)

[jan]

The MRI doesn't necessarily mean MS.  I have lesions and in the area that makes MS suspect and I was diag with MS.  Later I was told I didn't have MS.  Here's a link to the criteria to get diag with MS...and just because you have some of the symptoms, don't jump to conclusions.   I have a lot of them.

http://www.mult-sclerosis.org/DiagnosticCriteria.html

[sally456]

Hi Jan...thanks for your input..what symptoms do you have, and since you were told you dont have it...did they tell you what you might have?

[sally456]

Ok, so now i talked to someone from this forum who said she just got her last mri test results whcih show high intensitiy of white matter in some areas...
does that mean ms?? because she has some of the same symptoms as me and you and others..now im scared again...

[sally456]

HI YVONNE..I HAVE THE SAME SYMPTOMS AS YO UWITH REGARD TO THE BURNING AND WATER FEELING IN THE HEAD AND ALL OVER BODY..iT FEELS LIKE DRIPPING, RIGHT?.ALSO TINGLING TOO...WHAT THE HECK IS THAT???
HAVE YOU BEEN TESTED FOR MS?

I DOES SEEM TO OCCUR AFTER I HAVE BEEN UNDER ALOT OF STRESS, FOR I HAD THIS ONCE A LONG TIME AGO WHEN I THOUGHT I HAD MS...I STARTED GETTING THE TINGLING, BURNING AND WATER DRIPPING SENSATIONS..NOW THEY'VE COME BACK SINCE IVE BEEN UNDER MARITAL STRESS..

THEY SAY THAT STRESS CAN MAKE MS WORSE..IS THAT WHAT THIS IS..OR IS IT JUST INTENSE STRESS CAUSING OUR NERVES TO PRODUCE THESE SYMPTOMS....ITS A VISCIOUS SCYLE..IT REALLY IS...

OR IS IT POSSIBLE IT IS LYME OR SOME OTHER DISEASE...IF ALL OUR TEST ARE NEGATIVE...WHAT THE HECK DO WE HAVE???

[jan]

I had a 24hr. holter monitor and TTT to get my diagnosis.

[nicobella]

so what tests should i ask for??

[jan]

I had the vertigo and feeling like I was going to faint almost 24/7, also brain fog.  I was diag with neurocardiogenic syncope and inappropriate sinus tachy.  I think the NCS alone would cause those problems.  It is similar to the orthostatic hypotension that someone mentioned.  Once I was treated I got my life back to a large degree and rarely have brain fog.

[CCF-Neuro-M.D.-PW]

I cannot give you a clinical diagnosis over the internet, as this forum is purely educational

It is encouraging that your brain scan and other tests do not show a serious neurological disease. Dizziness is a common problem and is best evaluated by the dizzy doctors, the oto-neurologist, who specializes in diagnosing patients like you. The Cleveland Clinic has two oto-neurologists for example. They use spohisticated tests such as video-nystagmography to diagnose dizziness. In this test the doctor watches your eye movements with a video camera, while your eyes are in special goggles and with performing certain maneouvres. Other commmon test ordered for these symptoms that can reveal a diagnosis are tilt table tests. In this test, your blood pressure, heart rate and symptoms are monitired carefully as you stand on a tilting table that tilts from 0 to 70 degrees.

Migraines or headaches themselves can also commonly cause dizziness adn vertigo due to the connections between head and neck pain and the vestibular balance system of the brain. Other causes need to be looked into first before attributing this to migraines. An intense feeling of fear can sometimes be related to a seizure, although your story does not support this theory a lot, but an EEG might be a useful test to get, especially if you have this feeling during the EEG.

Ask your doctor about these tests or a referral to a dizzy doctor, you will never look back!

Good luck

[CarlW]

Sounds like too many tests.  Sounds like the only people making out good with all these tests are the doctors.  How many times do we hear about something like this where the person goes and takes and pays for all these tests to find out nothing? They only end up more confused.  Does anyone ever actually find out what is wrong after all these tests are done?

Nicobella, I feel just like you except for that it sounds like you have the virtigo worse than I do and for that I am sorry.  I also feel stupid and sometimes I forget completely how to think...that's pretty scary.  Is that what brain fog is? And what is a balance test?

[patsy10]

A very large percentage of people who have Lyme never saw a tick bite or rash.

[Citizen T]

Your questions was 'real or not'?  The only way to find out is through testing.  Your doctor most likely only did basic blood tests.  You should get additional testing, the tests listed above rule out certain systemic disorders as well as immune system problems and inflamitory conditions, as well as others.   An EEG and TSH + free t4 should also be checked (TSH was probably allready checked in basic testing but free t4's need to be checked too).

[Citizen T]

also get checked for orthostatic hypotension

[nicobella]

I was never bitten by a tick so why lyme disease?? the doctor's have done a bunch of tests...blood and otherwise. I wore a holter monitor for 24 hours and had numerous EKG's done. aqll neg. I have also had a chest x-ray done. Are you a doctor??

[Citizen T]

nah thats not anxiety... something is wrong.   Ok, this time how about a Lyme titer, a Lupus screen, ANA screen, Protein C and S, CBC, Comp MP, B12,  repeat MRI, MRA and MRV of the brain, and MRA of cervical-4.    Also get a chest xray and EKG performed during dizziness.