Still dizzy 22 mos later... (CONT)

[lararobin]

12) Sept 2008 -Dr. Gerhardt, Neurologist ordered a MRI of my thoracic spine still considering MS. IMPRESSION: Unremarkable MRI examination of the thoracic spine. Alignment normal. The conus terminates at approx T12-L1. And, MRI of cervical spine IMPRESSION: No significant interval changes. There is evidence of minimal disc degeneration at C3-4 and C4-5 with some uncovertebral hypertrophy and minimal bulging of the annuli, but no significant stenosis. The remaining intervertebral discs are normal in height and posterior contour.
13) Dec 2008 -Continuing to be monitored by Dr. Gerhardt, Neurologist and Dr. Froehlich. Both Dr’s have not given me a diagnosis for my current condition. It is Dr. Gerhardt’s opinion that my MRI findings are non-specific and could be due to my unknown virus in 2003. He believes the fact that all subsequent MRIs have remain unchanged makes MS unlikely. He say’s I don’t present like his MS patients. Dr. Froehlich at this time does not believe I have APS. He is going to continue to monitor me every 3 months b/c my Beta 2 Glycoprotein IGA test is still coming back abnormal. Low titer findings, but my PTT is now normal. He is hoping this is related to my pregnancy in 2008.
14) January 2009 Visited Oasis Orthopedic Specialists in Frisco regarding hip pain, popping and pubic pain. X-ray shows the bottom of my pelvis is off by 2.35mm. Diagnosed with greater trochanteric bursitis, sacroiliitis on right side, Pubic Symphysis dysfunction vs Osteiitis Pubis, and Post-partum coccygodynia. She referred me to a PT and I have had no change.
15) Feb-March 2009 -Sought care of Neurochiro with no change in case this dizziness/imbalance/lightheadedness was due to a spine / neck issue. Another theory shot!
16) April 2009 -Visited Dr. Peter Roland, Neuro-otologist that comes highly recommended at UT Southwestern; ran 4 inner ear tests (Posturagraphy, Tilt Table, Hearing Test & VEMP... all normal except VEMP); Vestibular Evoked Myogenic Potential showed my inner ear nerve on both sides to be completely dead; couldn't even pick up noise; Dr. Roland believed my symptoms were consistent with this finding the slight inbalance/dizzy/tipsy feeling but he didn't know how to treat me b/c the VEMP test is so new clinically; he isn't sure if it will resolve but suggested vestibular therapy and said he believed it might get better in 3 to 5 years; he said 4 things could have caused it... inner ear virus (unlikely b/c on both sides)... hypotensive event (possible during c-section but my records don't show my BP was significantly low ... I pulled them)... blood clot (unlikely b/c again both sides were affected/bilateral finding)... and I can't remember the 4th but it was ruled out. The vestibular therapist I saw about 3 or 4 times. It didn't help resolve the feeling. I'm wondering if my VEMP's could be absent due to MS or Lyme. Also, sought the care of an ENT right after having Kate and my ENG was normal. All testing was normal. The ENT said "he believed my condition was neurological, most likely MS in his opinion and it would probably rear it's ugly head down the line. He said he sees many patients with MS that hang in limboland for years before diagnosis and that is what he believes I have".
16) May 2009 -Discovered I was pregnant with 3rd child... total surprise.
17) May 2009-Jan 2010 -Still tipsy/lightheaded/dizzy for pregnant but overall it was primarily uneventful and normal; was followed by a Hematologist due to my slightly elevated anti beta 2 glycoprotein IGA; My IGA did elevate a bit to low 30s (anything over 18 is abnormal) but then it went back down to normal throughout pregnancy; I was on a baby aspirin just in case. I never had to go on Lovenox (blood thinner) b/c my IGA antibodies went back down to normal. Only receive injections if over 35.
18) Jan 2009 -Dizziness seems worse at times right before due date... & I notice a little numbness around the top of my lip.
19) Jan 12, 2010 -Vaginal Birth after c section was successful; no issues and uneventful; Caroline joins our family.
20) End of Feb 2010 -Notice numbness/tingling/sticky feeling over my top lip and down the left side of my chin to upper part of my left neck; little numbness/sticky feeling to left of my left eye comes and goes; cold sensation comes and goes in my chin; numbness comes and goes around lips/chin; I have noticed my dizziness seems a bit worse and a little weakness possible in my left arm and hand. I can't tell if this is from anxiety or truly happening. Sometimes I feel it is a little slow or weak.
21) Present -Living daily with tipsy feeling since birth of my 2nd daughter, Kate in May 2008... every single day since her delivery I have felt "hungover" and just off. My neuro still doesn't believe it looks like MS, but he has suggested I go to the MS Clinic at UT Southwestern. He believes Lyme is highly unlikely b/c of the labs run in the hospital in NY and my geographic location. Says I can find a "quack Dr" who doesn't have rounds at any of the local hospitals that is a warning flag to him not having an association with a hospital who will pump me full of antibiotics but he wouldn't recommend I go that route; He did agree to refer me to a credible Infectious Disease Specialist who I am going to see on Tuesday, 3/23/10. I just had labs run at my Primary Care Physician do to the new symptom of numbness in my mouth. Everything was normal (CBC, ESR, Electrolytes, Urine, etc etc). My glucose was a bit high at 108 I believe and my ANA direct came back positive for the very 1st time ever, but the Dr. still considered it normal b/c my titer level was 4. Anything less than 4 is considered neg per lab. 5 to 9 is unequivocal and 10+ is positive. I am still going to consult with a Rheumy again in April. I've always wondered if this was an autoimmune disease.

Symptom Review:

-Tipsy/Lightheaded/Dizzy since birth of 2nd child, May 2009 - consistently dizzy. always there, but varies in degree. I have had some great days where it's there at 10%, but it always returns back.
-Muscle twitches/spasms since 2003 virus... worse with stress... but generally the same since virus in 03. Better when well rested and hydrated.
-Numbness/Sticky Feeling/Cold Sensation in upper lip, chin and down into left side of top neck. Also to the side of my left eye.
-Same feeling stated above of numbness/sticky feeling (never cold yet) in the right side of my lower calf. Comes and goes since birth of daughter.
-Slight blurry vision since birth of my daughter in May 2009, worse under flourescent lights, I believe my eyes have a problem properly dilating b/c it seems worse under flourescent lighting and bright lights). Sought neuro ophthamologist and all tests were normal. Prescribed reading glasses but I did have a stigmatism. Some days better than others. When I am real dizzy, my vision is worse. Never to the point of not being able to see. I can still see good but I have to focus harder on the bad days. NEVER experienced double vision yet.
-The feeling of peppermint oil being in my eye when I lay down at night. I notice that if I am laying on my right side it will be in my right eye and even kindof seep into the right side of my right eye. Like their is liquid in my head that is floating around. Yes, super strange... but thought I would include. Peppermint Oil or cold sensation, whichever would work to describe the feeling. Like you are sucking on a mint and inhale that feeling in your throat is what I feel in my eyes at night. Varies in which eye based on which side I am laying on. This started after the birth of my 2nd child too.

I look forward to your thoughts, comments, recommendations! Thank you for your time.

[slightlybroken]

Sorry, but I couldn't find your older post to see about this question.

Have you ever been to an neuro opthamologist or opthamologist? If you haven't, I would consult with one, and maybe they could shed some light on what is going on with your eyes.

If they find something, this could add more evidence to what is going wrong in your body. Explain to them when you go, about your eye symptoms and the tingling around your face area, but please make sure you see an opthamologist and not a optometrist.

If you already have seen an opthamologist..sorry, I couldn't find your older post.

Take Care

[lararobin]

My 1st preganancy was completely normal and no new symptoms after. 2nd pregnancy normal no symptoms and right after delivery... Even in the hospital directly after c section I could feel the dizzy/tipsy feeling. I figured it was the pain mess
they give u after a c section. I had never been on pain meds before so didn't know what they felt like. Ever since her delivery 22 mos ago,
the feeling is there. Sometimes really bad other times almost normal but never ever gone. My 3rd pregnancy was normal. Noticed a tiny bit of numbness and tingling around my lips right before delivery. Delivery was great and then about 5 to 6 weeks post partum the numbness/tingly/sticky feeling started
around my mouth on left side and around my left eye. To the left of my eye. Strange I know. The blurry weird slightly off vision (like my eyes have been dilated at the eye dr and almost just almost are back to normal) and dizzy/tipsy feeling have been consistent since 2nd delivery. Vision is better when dizziness is better but never ever truly gone.

[lararobin]

All of my in office tests are normal. My neuro
always says I "look way better than I feel" or "you don't look anything like my MS patients". My EMG and nerve conduction were basically normal. One area showed a non specific
weakness I believe in my leg but overall they were normal he felt. Those were done after my 2003 "virus episode". I had a spinal tap done today. Hoping that will provide some answers. We will see. Thanks for responding and for your encouraging words.

[slightlybroken]

One thing I can say is, that you have a great timeline.

For Lyme Disease your best options is to have the Western Blot test ran. There are several test to detect Lyme. They are the ELISA, IFA, and the Western Blot, but the Western Blot can pick up on chronic Lyme disease. I would check your records and see if this test has been ran, and if not see if your doctors will do so.

As far as MS is concerned, who said MS has to follow a specific pattern and show up in specific places, each and everytime? I'm a limbolander myself, and I have the same issue with my doctors. I have several doctors, like yourself, that believe that my symptoms are from MS, but my MS specialist is just looking for the typical MS patient...the typical presentation.

In a way I think you do present that something autoimmune is going on, because you have some form of relapse after the birth of your children. How was your symptoms when you were pregnant? Were they stable? Do you always have symptoms, or do they come and go? How long do they last, if they do go?

Another question is, Do you have an abnormal neuro exam? When they perform all those test on you in the office (walking heel to toe, touching finger to noes, reflexes, etc.) Do you know if there are any abnormalities?

There is one thing I can think of, and this is just a guess on my part about the peppermint oil on the eye, is that a cranial nerve could be irritated. There is a cranial nerve that (I can't remember which one) has something to do with the surface feelings of the eye. There is also a cranial nerve (Vestibulocochlear nerve VIII) which is responsible for transmitting sound and equilibrium (balance) information from the inner ear to the brain. Maybe this has something to do with what is going on with you. BUT I'M NO DOCTOR LOL.

I hope that somebody can figure this out for you. I know how you feel. It looks like your trying everything to get to the bottom of this, so stick around with us, and maybe we can give you some ideas on what to do, or at least some company :)

Take Care

[ack65]

I am new to the forum and undiagnosed but have many of the same symptoms you do.  In all the reading I have done I have never seen the "pepermint oil" symptom but I too have this - it is a very cold sensation just like you desribed and I can have it in my left eye' nose, or sometimes the roof of my mouth.  It mostly affects my nose.  I hope others out there might know about it or have experienced it as well.  I hope you find your answers soon. A