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Chiari Malformation Community
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Avatar universal

Symptoms, seeing 7th doctor in 9 months!

.I've been EXTREMELY sick for 9 months now.  I have no clue whats going on and neither do doctors I see.  

Symptoms:

April 2011: Rapid heart beat, chest pains, numbness and tingling up my left side of neck to lower lip, then down left arm to pinky.  I had 2 EKGs, both normal and 2 chest x-rays (normal).  Was told it wasn't my heart (?).  

May 2011: I had a sinus infection that started on May 8th (Mother's Day) that lasted a week.  That Friday I was not myself.  I would zone in and out, be confused as to where I was and what I was doing.  Husband and I were on a date and got my hair cut (once a year thing for us).  By the time Saturday came, I didn't know how to drive (memory loss), where I was going, what Iwas doing and it just became very scary.  I started getting paniced and nervous because I never felt like this.  On that following Tuesday (week and a day past Mother's Day), I went to the ER because I  was having extreme headaches for 3 days straight, vomiting, confusion, loss of sleep (pacing at night), unable to breathe and neck stiffness.  He told me I had a tension headache (different then any other tension head I had before) and I had Acute Bronchitis (?). Found out my heart was racing 136bpm!!!
Wednesday came, I was WORSE!  I felt like I was going into this dark place and wasnt coming out of it.  I couldnt breathe, I oculdn't focus on anything and all I wanted to do was sleep but couldn't because I thought with my heart beating so fast and unable to breath and vomiting with the headaches, I wouldn't wake up.  
Thursday I went to a walk in.  That whole day, I couldn't remember how many tylenols I took and when.  My hand was so cold, I thought maybe I did something to myself (sliced wrist) and didn't know because I couldn't see, think, it was a brain fog thing!!  I should of never told the walk-in doctor that because she had me rush down to the ER again with my whole family (4 young kids and hubby) and they thought I was on drugs, suicidal, bipolar, schitso (sp?), drank too much...after talking to Mental health and explaining to her that I was just giving examples, that I wasn't trying to hurt myself, she said I was clear.  Bloodwork came back for the alcohol and drugs, thyriod and all was good.  Walked out of the hopsital with instuctions not to drink caffeine!??!

After that whole thing, I've been researching...SCARED TO DEATH to see any doctors....I seen another doctor in November 2011 because I had that really really bad episode again.  She thought it was hormonal (told her how I was treated last time in April).  Tests came back normal except my Vitamin D.  It was very low and was told to take Women's 1 A Day...which symptoms are getting really bad! I have a appointment coming up on the 24th of January and hoping this is it!  

Symptoms: Memory loss-Short term (Very SCARY!!) (Can't remember if I put kids on bus sometimes when it's REALLY bad!)
                  Confusion with loud noises (Kids screaming or loud music)
                  Can't think of words when talking (makes me feel stupid)
                  Balance off (can't walk into doorway without stumbling)
                  Heart races (120-150 bpm)
                  Jugular Vein (sp?) pain radiates up to jaw line into ear or bottom lip
                  HEADACHES (Back of head, up to eyes and into temples)
                  Nausea/vomiting with headaches
                  Weakness in legs
                  Numbness and tingling in arms and legs
                  Pins and needles feeling bottom of feet (COLD)
                  Vertigo (standing up too fast, coughing, sneezing)
                  Clear floaters in vision
                  Black floaters in vision that turn into glitter like sparks
                  Electrial shocks behind head, into inner ear  to back of neck, causing hearing to ring, pop and I end up not hearing for several minutes
                  Blackout/tunnel vision in shower (while looking up to wash out shampoo)
                  Blurred vision
                  Blind spots in vision
                  Base of skull and top of neck pop and crack constantly
                  Difficulty driving
                  Sun hurts eyes
                  General eye pain
                  Constantly pink eye/blood shot (think thats why they thought I was on drugs?!)
                  Brittle hair, poor dry skin, chapped lips
                  Problems swallowing (knot like feeling)
                  Can't grasp anything with my hands...fumbling the object around
                  Legs get so numb, that I fall in the middle of parking lots and had no idea I fell until I look around and people look at me =(  
                  
I just want to know whats going on.  I don't want to go on and on for years with different doctors.  I want to come out and say "This is what I have, please help me!"  

I was also looking at Multiple Sclerosis and Lyme Disease...possibly Diabetes, but diabetes don't have alot of my symptoms.  We had a HORRIBLE year with Ticks this year.  4 out of 6 of us in our family had atleast on tick.  My youngest had 6 from May-June!  

Thanks for reading and hope I can get answers!!
-Brandi .
6 Responses
620923 tn?1452919248
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

I understand u r scared, and have no idea what is wrong, but u will have to go back to a dr to get answers and treatment.

MRI's and more blood labs r needed....

U will also want the Drs to look at ur magnesium, potassium, Vit D and B12....knowing ur Vit D is already low, u may have difficulties absorbing what u need from supplements if ur magnesium is also low, they work hand in hand,......

U will also want them to rule out the issues u mentioned as all of us do get tested for MS, lymes and lupus....and related chiari conditions.

  ANd what is needed to get started is a brain MRI, a cervical spine MRI and go from there.....

   "selma"
1306714 tn?1327260680
It sound's like you have a lot going on.  As Selma suggested you need to ask for a MRI of brain, or even if they would a full flow study done.  It is discouraging when you go to all these Dr.'s and you don't get any answer's.  With me I found out it was in my record's for 1 and half yrs that Chairi was the issue but was never told.  As straight out for them to look for this.  I pray you will find your answer's.  As someone told me on my journey of discovery.  "Keep being persistant.  You know your body and you know something is wrong.  Your find the doct. that will answer's your question.".  So I took her advise and it paid off.  Wish you the best.
992677 tn?1537672503
For what it's worth, selma is dead on with this one. To get that Brain MRI you have to go back, don't take no for an answer. Demand the Dr order an MRI. That is what I finally had to do before we got answers.

Just prior to the demanding, I was driving places that I always went and not remembering how to get home. Driving with my son and lost all sense of speed, too me I was going very slow until I noticed this horrible driver in front of me creeping down the highway... looked down and I was going about 140 in my truck down the highway but felt like I was going maybe 25 or so.

You are not crazy! Just do as selma suggested here. Go back to the doctor, demand the MRI's and then immediately request copies of the MRIs and reports. You have a right to them and may need them. Now if the doctor you have now doesn't see what is wrong 'don't give up' your life is worth the effort to keep on looking. Many times it just takes finding the right doctor, thus the reason for keeping a copy of those MRIs.

Don't be too hard on yourself, you can not help what your body is doing.

CW
1925822 tn?1333709217
Get an mri as soon as possible.ur symptoms are a lot and honestly reading ur story i felt sometimes it was mine.it all started with sinus probs and feeling sick...then finally feeling i will die because of breathing issues and at the same time my racy heart...on one of my seizures i told my boyfriend...ok now i will die...omg its so hard sometimes and getting an answer is what u need...good luck
Avatar universal
The way you described the driving!  OMG sounds like like me!  I've had two really bad episodes so far that were BEYOND scray!  First episode, I was driving in the morning, around 8:30am and the sun just beamed at me.  I couldn't see anything. Next thing I know, my heart it fluttering, beating through my chest, legs go EXTREMELY numb and having a hard time breathing.  I had my 7 year old son in the back and had to pull over!!  

The other episode I had was driving to my bowling league on Sunday mornings.  I couldn't remember how to "drive", started getting that really bad attack again, unable to hold the steering wheel and couldn't feel the petals below my feet.  My legs got all jello-ie feeling, like they were floating and had to pull over.  But that wasn't all, when I gotto the bowling alley, I had this really bad Brain fog episode!  Everything was a blur, my hearing was going out of wack and I felt like falling.  I was unable to throw my ball, let alone get balance!  I had a HUGE headache and couldn't focus.  All I wanted to do was SLEEP!  Luckily this is my last week of bowling for this year.  I SERIOUSLY need to know whats going on.  

My Brother has a Cyst in his Brain (too scared to get it checked out more) and I have a sister who had a cancerous Brain Tumor (she's alive and well!)  I've had this pooping for so long, but unclear as to whats going on and why this year!?  Sometimes its so bad, it's like I'm on this constant downhill slope of life.  Sometimes my breathing gets so bad, I feel like I'm dying...brain fog and blurred vision is the worse!!  

My Husband is the type of guy that works all the time, so I don't really see him.  Finally, this last weekend, he got to see one of my episodes unfolding.  I was bending over to fold the clothes in our room, when I stood up, I couldn't adjust my vision, I started getting really bad vertigo and the ringing in my ears were horrible.  I was just standing there, with the blank stare and I guess it freaked him out.  I felt like I was going to pass out!  He held me and told me to set up another appointment.  I'm DONE with ERs, no matter how sick I get, seems like a waste of time!
I'm looking forward to this doctor.  My Mom recommended him to me because he's the type who will do anything to find whats going on.  Watching Mystery Diagnoses or Dr. G, they tell you if someone keeps going to the doctors, for the same symptoms, something is wrong!  I'm 27 and feeling like I'm going on 50 at times.  I'm TOO young to feel like this and seems like nobody listens.  

I want to thank everyone who wrote on here and letting me know what to do. My Mom's friend who 50, actually was diagnosed with Chiari in 2000.  She had her operation and everything and says she feels great now.  

Again, thanks for everything, all the luck and I just want these feelings to go away.  Crossing my fingers this is the doctor for me and will actually listen!!  Bless you all!!
1306714 tn?1327260680
Some of have went through the journey you are taking now and it is a scary flustrating place to be.  As someone else said keep being persistant and keep seeking.. You know your body and you know something is wrong.  I went to 4 dr's before I finally went and found the one who would listen and explained to me what what going on.  I had surgery and I'm thankful for that.  I am now on a slow but sure recovery.  You are too young to go through life without answer's.  I wish you the best, also know you are never alone.  We are here for you on the day's you don't know where to turn.  This forum has pulled me out of some pretty dark times.  We are here to lift each other up and just knowing your not alone help's.  No one can understand what we are going through or gone through unless you have walked on this path and life of Chairi.  Be persistant and you will find the answer's you need.  Wish you the best.
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