Posted 5/26/2016 1:13 PM (GMT 0)
I am new to this site, any suggestions are appreciated!
This may be long winded, but here is my story.
My main symptoms for the 4 months were:
Headache
Stiff Neck
Night Sweats
Slow/Slurred speech
Fatigue
Slow Mobility
Brain fog
Difficulty making sentences/stumbling over words
Poor concentration
I live in NY, I had flown to California in October with my fiance for vacation for a week. While in California, I began to feel off balance, We had been to two separate hotels both of which had elevators So I figured the mimosas, elevators and too much sun were to blame for feeling off. There was a time we were in a gelato shop and I grabbed my Fiance's arm and said "oh my god, did you feel that?" he said "feel what?" (knowing we were in California and how prone they are to earthquakes I thought I had felt a tremor.) I whispered to him "I felt the floor bouncing" I didn't want to scare him as he was nervous about earthquakes so I left it alone.
Fast forward to the day after we returned from vacation. I had a feeling that I was on a buoy swaying back and forth, ALL DAY EVERY DAY. I had to hold on to furniture when I walked it was so bad.At one point I wasn't able to drive, doing laundry was a task as I had to hold onto the side of the washer when changing the laundry as to not fall over.
I went to the ENT and told them about my "vertigo" as they were calling it but IT WASN'T VERTIGO. I kept repeating myself. Vertigo was when the room spun and many people felt they were going to get sick. I never had vertigo, I never felt sick just felt like I was on a rough boat ride I couldn't get off.
That evening, I had ended up in the ER for a possible stroke. I had felt like this for a few days but it got much worse (possibly from the stress of my drs visit with no answer) My jaw would get heavy and I felt like I had marbles in my mouth. I had slurred speech and couldn't put together sentences. My whole body felt like a wet noodle and I was BEYOND tired. It wasn't a stroke and the ER dr released me with "severe sinus disease". Which, was no new news to me as I've been suffering for years with nasal polyps and actually had a date scheduled for the following two weeks to have them removed. (which was cancelled and is not re-scheduled for July 13th)
On to neurologist #1: She scheduled an MRI (without contrast) and discussed possible MS. She said all of my in office tests were perfect. Which, I don't know who she was looking at but the second I would close my eyes I would fall forward or backward and swayed when standing still.
I waited and waited for the MRI results as I was very anxious, I called the drs office numerous times and finally spoke to a nurse. The response was "your MRI is normal" and I said "Would the dr like me to come for a follow up? " she reponded "No, No follow up" What the hell?
This is where it gets fuzzy but this is how it went.
Saw a 2nd neurologist at Mt. Sinai hospital in NYC which is supposed to be very good: she said she thought I had ear crystals and gave me a prescription for dramamine. At this point I thought, what the hell, it couldn't hurt. (it didn't help)
In the mean time the ENT wanted to do an ENG test on me to see if there was a problem with my inner ear. They make you look at lights on the wall, follow them with your eyes while wearing special goggles so they can watch your eye movements. Another test they did was a caloric test where they blow warm and cool air in your ears while wearing goggles that I couldn't see out of. It's supposed to make you REALLY dizzy and they encourage you to make sure you have a ride home. They will watch your eye movements as you are supposed to get dizzy to evaluate whats going on. Neither of my ears reacted. I wasn't dizzy at all. The audiologist was like hmmmm. They thought it could have been off because of medication I had taken a few days prior so they scheduled a re-test.
I had another retest without medication or anything that could potentially throw the test off. It came back abnormal a second time. This was the ONLY test that came up abnormal and I could have cried to the audiologist when I said "You mean, I'm not CRAZY there really is something wrong?" She nodded her head and sent me off to an Otologist.
The otologist: The results of my ear test said I had"Verticle Nystagmus" and "Bilateral caloric weakness" The otologist reviewed the info, examined me and said "it's not your inner ear, it has something to do with your brain/brain stem" HOW SCARY. He said, I need to go BACK to the neurologist (this will be for the 3rd time) and see an infectious disease dr and he mentioned how Lyme can screw with your body and not to take it lightly and get treated immediately.
Saw an infectious disease: did western blot, tested for Syphilis since its known to mimic lyme. Both negative.(gah!)
My last neurologist (they were all different): He looked at me and said you're way too young for this, was going on a hunch that it was lyme (I think it was more than a hunch) He scheduled me for a Lumbar puncture/spinal tap (That wasn't the best) and put me on IV Rocephin starting two days after the tap.
The spinal tap was perfectly fine.
I had IV Rocephin for 27 days, I would have night sweats around day 16 and had the worst stiff neck of my life. (Both, I believe were Herx) I finished the antibiotics and the dr didn't even want to see me before I finished to see how I was feeling. I had to fight to get back in an see him as I still wasn't feeling any better. I was still dizzy when I moved too quickly or turned my head. Now he completely flipped the switch on me, he said if it was lyme I would have been feeling better, So it's not and instead I have ear crystals. And I said, how does the explain the brain fog, poor concentration etc? He said he thought there was an ear crystal out of place that was lying on a nerve connecting to my brain. (A little far fetched for me to believe) He had me start vestibular therapy twice a week and also gave me migrain meds. I never complained of a migrain, whyyy??? (These drs are so ridiculous is it just NY drs or all of them?)
Vestibular therapy worked, I was feeling better after 3 weeks and no longer needed to go. But the only thing that was better was the dizziness. I still had drenching night sweats, irritability, fatigue, mood changes.
I refuse to go back to that dr and am now searching for an LLMD who will correctly diagnose and treat me.
I saw my primary last week, my mom works in his office and he has been my primary for at least 15 years. I was giving one more good try before anything else. I went into his office slumped over and he asked what was wrong I told him I felt like I was losing it, night sweats, fatigue etc. He did blood work as he thought I had a hormonal imbalance. which came back yesterday, blood work was normal. He now wants to put me on anti-depressants (which I don't want, after everything going on the last thing I want is my brain chemistry altered) and he wants to do sleep apnea test on me as he believes I have sleep apnea which is causing me to be irritable and fatigued. (I don't think I have it but what the hell, I've had every other test, what's one more?)
I am frustrated! I'm 30 years young, trying to plan a wedding and I've seen 3 neurologists, had two er visits, 1 ID dr, primary care, one spinal tap, one round of IV rocephin, ENT, 2 ENG tests, 2 MRI's, one CT scan, multiple blood tests and its been 7 Months.
Any and all recommendations are greatly appreciated. I am under the assumption I have a co-infection. Babesia is the closest I can come to based on my symptoms. Also, does anyone know about Igenex labs and how they can test for babesia? I tried to get my primary to sign off on the paper work to send my urine and blood to them and he refused. ((shakes fist vigorously)) Also, if I have been treated with a round of IV Rocephin, if I do the test and send it to Igenex will it come back negative if ive already been treated?
Thank you all so so much!