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.
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.
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