An update

[horevo]

Hi friends,
Just wanted to update you on what's going on. I got out of the hospital Friday and back in since Saturday. I'm in now still. Turns out my parathyroids haven't woken up yet and we can't get my calcium levels under control. I came into the ER in full body tetany and stiffness and couldn't even get out of the car. So it's been a game of catchup with my calcium and magnesium and we are trying to get it controlled so I can be only on oral supplements. So for now I'm in the hospital until we can get it under control. On top of it my mg is out of control. Can't swallow my pills because they get stuck and have all over twitching and cramping. Endo sees me every day, neuro sees me ever day and my wonderful surgeon checks up on me multiple times a day. This happens in only 10% of these cases.....of course it would happen to me. Ok, just checking in.

 

[trfogey]

Wow! Sorry to hear that you are having such a tough time. Sending some prayers your way that they'll get you stabilized enough to go home soon. Getting your electrolytes all fouled up is a scary experience.

 

[Kathylund]

Im so sorry you are having such a hard time, prayers coming from this way also! please keep us updated.

 

[notgivnup]

So sorry you are having such a bad time right now. Praying everything gets straightened out real soon and you find Peace and comfort.

 

[TedH5]

My goodness I am very sorry to hear about everything you are going through. I will definitely say a prayer for you. Stay strong and keep the faith.

 

[momofsixkids60]

My thoukghts abd prayers are with you and yoiur drs.

Kimberky

 

[momofsixkids60]

Horevo, the "like" was for keepong us inforned.

 

[rose]

Try not to get discouraged!

I read with interest a post by Patricia in response to you in another thread. I'm quoting her here (abridged version) in case you did not catch it. She wrote more, so if you have not gone back to your "two year of symptoms" thread, this is where you can read the rest of what she said. (partial quote) reading your couple of post l realised that you had a disfunctional thyroid .weakness anxiety twitches all thyroid related .The problem is most doctors do a blood test called a TSH. If that is normal they treat for anxiety .The catch all. But you needed a tsh t3 t4 and thyroid uptake .

I thought this was of great importance for you to read, as you've been concerned about the twitching, and thinking that MG would not cause this problem (which I don't know if it does or doesn't) Anxiety being provoked by thyroid I have read about before, but did not know about twitching coming from thyroid, or the more specific testing needed sometimes to reveal problems.

I sincerely hope you get your electrolytes balanced, and are home with your family soon. Sending you a big hug!

 

[momap53]

Hang in there! Hope they get you stabilized soon. You are in our thoughts and prayers

 

[Ms. Pie]

Sending good and loving thoughts your way Sweets! Get well soon!

 

[HelenL]

Hope you get everything under control soon so you can go home!

 

[horevo]

Hi guys.
Still in the hospital. Would love to go home but apparently it takes a while to get the metabolics under control. They won't let me leave until I can be completely off the drip. The worst is I'm having trouble eating because I'm periodically coughing on liquids and food. I don't know if it's the mg or if it is from the thyroidectomy...I read it happens. T neuro stopped my mestinon because it increased my twitching... I mean out of control and. Made my weakness worse. He, as I have decided as well, doesn't think it's really working for me anyways....l I said that a while ago. I trust this guy because he is one of the best neuros in the area and is very familiar with e specialist that diagnosed me. He also said it might not be MG. maybe some kind of myopathy or something but we can explore more after I get out of here and get this stuff under control. He ordered a cpk, it actually went down to like 35 from53... Which is good and. My ESR went up again, but my response is... Ummm, I just had a major surgery a week ago.

Rose, I did read Patricia's post. I agree the thyroid can do also, but I've had my T3, T4, TSH, and antibodies tested. I was the pfect thyroid balance... Even with the cancer. I know this wouldn't be the appropriate reaction, it I can't help but laugh at the situation. The odd of my nodule being cancer with otherwise normal thyroid hormones, less than 5% myasthenia, 20/100,000' and of course this complication after thyroid surgery less than 5%. Can't I be a normal odds person? Seriously? Sorry for all the venting, but this is taking a physical and emotional toll

 

[momofsixkids60]

Horevo,

I have been reading my QUEST magazine dated Jan-Mar 2012 (I believe it's also online) anyway, there is an article about MG and a thymectomy. There are actually 2 such articles on page 18 titled, "Cytokinetics testing CK-2017357 in MG and the other is, Thymectomy in MG being studied.

Praying for your body to heal,

Kimberly

 

[Al]

Posting the same message 6 times will not get it through moderation any faster. It just makes life harder for the people working to keep this forum free of garbage and spam.

AL.

 

[olly]

horevo,so sorry to hear how ill you have been and i really hope they can sort it all out.........sounds like your getting good care.
will be thinking of you.