Living with a Disconnected Brain

Day 3 without vitamin D.

I woke up having heavy spasms, my hands trembling, my bones in my hands and feet are extremely painful. My lips are numb, I can’t think very well and my vision is vague. When I get up I’m completely stiff. Klaas needs to help me to get dressed. I feel hopeless, terrified, hopeful, angry, happy and I can’t wait till I can get my blood tests on Monday.

My moods swings from relieve that we finally found the cause of my symptoms to despair. What if my blood is normal? What if the doctors are right it’s just a extreme Conversion Disorder. Tests in the past didn’t solve anything. So why now after 7,5 years.

The last couple of weeks I have been reading a lot about Hypoparatyroidism. I didn’t even know we have parathyroids a month ago.

When I was a child I was often tested for thyroid problems. I was often tired and all kind of aches, but nothing was found. I know they tested me vigorously on thyroid problems in the first few years of my illness. But I can only find evidence of testing my calcium levels in 2006, but I don’t have all the blood tests results at home. I can understand why this condition was not at the top of their list, especially for the first couple of years. My spasms where irregular. I had so many problems it was hard to see the tree through the woods.

When I first encountered this disease a couple of weeks ago I started to cry. I recognized so many symptoms. The doctors are focusing almost completely on my spams and tremors. Often they didn’t even bother to mention I’m in pain in their reports. Numbness in my face and fingers where laid aside. Surely I must have been hyperventilating. My always twitching hands and feet where not important. Since label Conversion Disorder was put one me it was even harder to get heard. Yes, I know they really tried to find what was wrong with me. But when I see the lists of symptoms of Hypoparathyriodism its hard to believe they didn’t put 1+1. But it is a very rare condition and it is often discovered by accident.

If I look at the list of symptoms almost all of my symptoms are logical. (when I have a bad day or little medication)

  • The spasms, tremors, muscle problems and twitching. Most of my spasms are in my hands, arms, neck and upper torso.
  • My muscles ache and are very stiff
  • My bones ache in my hands, arms, feet and lower leg, sometimes even in my jaw, ribs or teeth
  • Tiny muscles spasm in my face near mouth or eyes
  • my fingers and feet always buzz and are painful, they make small movements on their own
  • I can feel like fainting, am confused, have memory loss, brain fog
  • I’m so tired I need to rest several times a day and have enough energy to walk a little
  • Vision problems
  • nails that break or are extremely flexible, hairs that breaks
  • hair loss (last few years)
  • very painful and heavy periods

On other websites I found other problems you can get with calcium problems which I can relate to:

Suddenly I can read the story of the last couple of years on websites. I finally understand why sometimes the symptoms got worse at night and in the morning before eating. I already had made my own conclusion that stress was not a big factor after all. But more what I ate. I always had the feeling that I sometimes used all of a certain chemical in my head, after that I got really sick.

But why is the Pramipexole working:

Apparently the PTH hormones level get increased with dopamine agnosts like Pramipexole (Mirapex e.o.) But that it doesn’t solve the problem and you keep having spasms on a bad day.

I can’t check for the trousseau sign at home, but my hands always move during testing of my blood pressure. Even in my sleep I can wake up with twisted hands. I can more them normally but when i relax they start to twist around and bend.

Yesterday I looked in the mirror and tapped my face. I tried this often for a couple of weeks now but no reaction. Suddenly I see my mouth cleanly move on his own accord. I don’t know how many times I taped my face yesterday but the Chvostek Sign is clear to see. I’m going to film it today.

Everything points to a calcium – PTH – Parathyroid problem. But is it true? Will I get help?

And if it true, what kind of damage are we talking about. I have these symptoms for years. What about my heart and kidneys? I have had spasms where I felt a sharp pain in my heart and it skipped a beat or so. Or that I couldn’t breathe during ahigh spasms in my upper body. All very scary stuff.

And the only thing I can do for now is wait, stay calm, record what is happening without vitamin D and hope.

Hope that when i take the vitamins again on monday I feel better, That the blood test is positive for hypoparathyroidism and hope for finally in 7,5 years to get


I don’t mind if I have to take medication for the rest of my life or have less energy then other people. But I want answers, a future, knowing what to do when I get really sick

I even have doubts to post this post because I will feel ashamed to have got everybodies hope up including my ownf. But I need to have faith so I will post it now

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Comments on: "Hypoparathyroidism or not" (2)

  1. Lovella Green said:

    Praying for you Sophie! Sounds promising.

  2. Oh Sophie. You are so strong. I caught up with your blog today and cannot believe how much you have been through. I hope that you can find out the source of your pain. And I hope you can find a doctor that you can count on. I realize that I don’t know everything about your condition but did the doctors not suggest a hysterectomy for your fibroid? I’m not a big fan of surgery when its not needed but it seems that could have helped you feel better faster even though you would’ve still had spasms etc. Hope things get better and stay better for you and your husband soon!

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