Hoping to find answers, yet very scared

This journey of recovery has been so overwhelming and yet I feel I have grown into a stronger person.
I was diagnosed with bilateral PEs in May, but so many weird symptoms started months before. My family and I went on a cruise the day after Christmas.  We went to the Bahamas and spent the day in a water park at Atlantis.  The next day my husband got sick, and then I got sick.  It seemed like a typical cold... I spent New Years Eve weekend in bed, and then seemed to recover.  In February I started feeling bad again, but this time it was just intense fatigue.  I felt like my insides were shaking, then I noticed my hands would shake when I would hold the phone or use the computer.  I felt very weak. This went on for a couple of weeks and I went to see a doctor.  She said I was dealing with anxiety, and prescribed Zoloft (which I only took for 5 days) and ran a full panel of blood work.  The blood work came back normal but the fatigue was just killing me.  I noticed different muscles in my body starting to twitch.  In my legs in my arms, in my hands.  I went for my yearly gyno exam and found out I had an 8cm ovarian cyst.  My gyno put me on Femcon FE birth control pills, saying that the pills may shrink the cyst (rather than waiting to see if it goes away on its own or surgery).  I was on the pill for 5 weeks and during that time I started with leg cramps in my right calf at night, and soreness in my legs.  The feeling of dizziness and fatigue, and just before I was diagnosed I was so restless I thought I was going crazy.  I couldn't sleep.... my body just knew something terrible was going on.  I still had the twitching and feelings of weakness.  Also one time my right leg felt numb!  (I have since read that this is one of the signs of a clot).  I went to a different doctor on May 6th, and he ordered an MRI of the brain the next day, he also ran a full panel of blood work, checking me for everything from Lupus, to Lymes disease, to thyroid, to adrenal.  Well I went to the emergency room on May 8th and was diagnosed with the PEs.  All of the blood work that the doctor ordered on May 6th came back normal (except my cortisol levels - adrenal glad - was very high.. however this past week I was tested again and my cortisol levels are in normal range now, thank God!), and the MRI came back negative (he was looking for signs of MS).  While I was in the hospital, I continued to get waves of weakness through my feet and legs.  I told the doctors and nurses.... they did standard strength tests, and said everything was fine.... but I feel they were so focused on the PEs that nothing else was really looked into.  I am three months into my recovery of the PEs.  A lung function test shows that my lung capacity is normal,  a 24 hour holter heart monitor shows that my heart is good. I am so thankful for this... but I am still dealing with the twitching and the waves of weakness.  I have told my GP and the nurse practitioner and they say it is all anxiety.  But my anxiety is so much better.  I talked to my therapist and she thinks I should see a neurologist.  I had an appointment with my pulmonary doctor and my endocronologist, and both have suggested seeing a neurologist.
I have an appointment with a neurologist on Sept. 17th (that's the earliest I could get).  I am very very scared.  I know that my experience with recovery from the PEs has made me a stronger person, but I am concerned about the neurological symptoms that I am experiencing.  I know God will not allow me to go through anything that His grace can't get me through, so I am hanging on to my faith, and praying for wisdom for the doctors that I see, and for healing of my body.
 

Replies

deleted_user
deleted_user

I pray that you will leave the appointment with a clean bill of health. I know you must be terrified, and that is normal. I would be too...any time you are feeling things like that and have to get checked out by a neurologist is scary! I don\'t know what to say other than that I am thinking about you and that you know you have much support on this site. I hope they get it figured out soon.
ldmendoza
ldmendoza

I have seen a wonderful neurologist. This doctor actually listened to me and took an interest in what I have been experiencing. She was especially interested in my experience with the PEs . During my appointment she stopped and researched the amount of estrogen in the birth control pill I was taking. She found out that it had high levels of estrogen, and she shared with me her concern over women taking synthetic hormones. She believes it is what caused my PEs. After a physical exam consisting mostly of strength testing and reflexes, she ordered a nerve conduction test, and told me that she believed nothing serious was going on with me. Just hearing her say that gave me so much relief, but still didn\'t explain why I was experiencing so much muscle twitching. Under my left eye twitched for 2 weeks, and my left index finger had a mind of its own twitching off and on for about a week and a half. One thing she noticed is that the other doctors hadn\'t checked my B-12 levels. Low B-12 can cause nerve damage over time. Well sure enough about a week later I got a call from her nurse, my B-12 levels are low. I am on B-12 injections monthly, and have just passed my 4 week mark since having my first injection. It\'s amazing but since about 2 weeks ago I feel as if I\'ve turned a corner in my recovery. The muscle twitching has calmed down, and the waves of weakness are gone. I\'ve had a nerve conduction test and got the results on Wednesday. The neurologist said that my nerves are perfect. I was so relieved. She said that some of what I am experiencing could be post viral, from the illness I had earlier in the year. It could be because my B-12 levels were low. I may never know.

I really do feel like I\'ve turned a corner. Emotionally. Physically. Spiritually. This has been the hardest year of my life, and yet the most fulfilling. My son\'s pediatrician told me that God was smiling down on me the day I went to the hospital and was diagnosed with PEs. He told me that he lost a good friend two months ago to PEs, she died in the car while being driven to the hospital after being misdiagnosed by the doctor. My heart broke when I heard this story. I realize this could have been my story too. I don\'t know why it wasn\'t. I pray that I never forget how precious each day is, and that my gratefulness is reflected in my life every day.