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Any ideas or thoughts?

346 Views 3 Replies 3 Participants Last post by  lararobin
I am new to this site and wanted to see if anyone here might have an idea of what is going on with me!

I had a baby by emergency c-section on May 30th. My blood pressure started to spike around week 37 and I had borderline low amniotic fluid. They gave me a TON of pitocin but she would progress b/c her hand ended up being above her head. Therefore, c-section. She is 4 mos old tomorrow... and every day since the delivery I have been lightheaded/dizzy/brain fog. This is my problem that I can't figure out. I need help diagnosing what could be causing this constant state of dizziness/lightheadedness/brain fog.

I thought at first it was the pain meds (which I had never been on before). They had me on a ton in the hospital and then released me with Hydrocodone and 800mg of Ibuprofen. I quickly weaned off of them b/c I was nursing my daughter and hated for her to have these meds in her system. It was at my first dr's appt that I mentioned the feeling of being unsteady almost like I just got off a boat to my OB/GYN. I told her I felt as though I was walking on clouds or had just gotten off a boat. Sometimes it feels like my head is too heavy for my neck. It is better in the mornings but still always there and gets worse as the day goes on.

LONG LONG STORY short, she tested me to see if I was anemic and my levels were fine. She also tested my TSH (Thyroid Stim Hormone) and it was fine. She referred me back to my Neurologist. Back in 2003 that I had a hospital stay for 5 nights with high fever and vomiting.

It all started with a rash on my trunk mainly stomach area. The best they could come up with was it was a harsh virus. After this hospitilization I started having muscle spasms... like little worms in my legs. That is why I have a Neuro. He ran an MRI to look for MS lesions and found tiny non-specific white spots that looked like it could be Migraines, Vasculitis, etc etc but not MS lesions. They have since stayed the same on subsequent MRIS in 2004, 2006 and now in 2008. He re-MRI'd me in July and my MRI was the same. He has since ran an MRI on my spine and it is clear. He ran a ton of blood work searching for an answer for me and tested me for everything under the sun including autoimmune disorders.

My ANA came back normal (always has every time it has been ran... even back in 2003). The only thing that flagged after 16 test tubes of blood was my PTT was slightly elevated. He referred me to a Hematologist after he repeated my blood work and my PTT was still elevated. The Hematologist suspected APS (Antiphospholipid Antibody Syndrome). He tested me and then diagnosed me with APS even though I only had 1 elevated anticardiolipin IGA antibody. My IGG and IGM antibodies were normal. Also, my DRVVT was normal. Also, I have never had any miscarriages (carried 2 babies to term) or had any blood clots.

Therefore, I sought a second opinion and the 2nd hematologist doesn't believe I have APS after re-running some labs. He said my IGA being elevated is non-specific and I probably have a mild form of von Willebrands disease type I (easy to bleed... easy to bruise... heavy periods... etc etc). I have seen a Rheumotologist in case she had any ideas regarding APS or my dizziness and she believes after reviewing my paperwork and records that I don't have APS or any auto immune condition. She suggested rest... more sleep and naps. Well, this strategy hasn't helped either. Now that my daughter is sleeping better, I am getting a ton of rest at night.

My Neuro prescribed Lexapro which has helped with my anxiety a ton but since starting I have noticed twitching (involuntary movements) and hazy vision at night. Like everything isn't as sharp and things seem to glow a tiny bit. I have also seen an Endocrinologist b/c my first hematologist discovered I have 7 nodules on my Thyroid which I am now having to monitor every 3 months. The largest is almost an inch so they are waiting and watching rather than doing a FNB. They suspect multinodular goiter. My grandmother had a goiter removed in her late 30s so I do have family history. The endocrinologist tested my Thyroid again and adrenal levels... but still doesn't think a Thyroid problem would cause my current condition. He believes this could be a secondary problem that came to light as a result of my search to figure out the dizziness.

I know this is the longest post in your history but I thought I would see if anyone on this forum has seen persistent dizziness, lightheadedness for 4 months with muscle twitches??? Any ideas on other tests or specialists I could try? I have 2 young children and I am determined to find the answer and get better. I feel the dizziness (never spins... I can drive and function overall) constantly. It is always there. I haven't felt normal since they wheeled me in for my c-section. I wonder if I have microclotting in my brain and really do have APS. I am nervous about MS appearing although I have yet to present with numbness, tingling or weakness.

Any help would be greatly appreciated and thank you for ready the longest post ever!

Frisco, TX
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Dear Lara,

Life with two young children is lovely, but it is hard.
As far as I am aware the white matter infarcts are seen in APS. I don't know if they are seen in other conditions. My Daughter and I both have Lupus and APS.
I often find it hard to think straight so I am not the best person to advise you. Others here are sure to help you. Welcome to the Site.
x Lola
Hi Lara,

Congratulations on the new little one. I'm sorry to hear you are having a frustrating time trying to find a dx.

My only question is have you been tested for diabetes? I know I always have problems with my vision and the diabetes does get worse as the days goes on (for me anyway). I felt bad for a long time but didn't know why until one doctor in Emerg tested me for a bunch of different stuff. I was shocked when they said I was diabetic. I'm surviving now, but it hasn't been an easy ride for us.

Just a thought. I wish you luck.

I haven't been tested for Diabetes since the baby, but my gestational diabetes was fine and I had a 2 hr glucose tolerance test right before baby and it was normal. They tested me b/c when I had a chemical pregnancy they ran my HCG and glucose. My glucose came back at 150 but it wasn't a fasting test.
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