Frustrated: More questions than answers

[crystalkk]

John,

Good luck with your appointment with the endo. How did they figure it out high calcium and high parathyroid blood work

[Naeco]

Thanks! There's a calcium test in the endocrine panel of the blood work. There's a very narrow range that it needs to fall within and when my blood work was flagged for a high calcium level we went back through all my old blood work from the past 3 years and found that the readings have been constantly varying within the normal range (which is not normal) and then it finally went out of the normal range recently, which would account for the symptoms I've been having during the past few months. It's so weird that unregulated calcium levels can have such a weird effect on the nervous system. They're testing my ankle tomorrow for torn muscles and ligaments because my legs have gotten so weak from these symptoms. I only got the neurological symptoms for this disease. It's very strange.

[mustang22]

This is reallllly interesting to me. I hadn't logged on for a long time because I think my anxiety is better when I stay off the computer! However, last week my twitches "changed" some to being more like it feels when a wisp of hair is bothering you, or a small insect. I constantly feel like I need to swat something away! I'm really bothered by this new change! I was just getting used to the regular, ole twitches.

Anyway, I started reading your posts, and I can't believe what I'm seeing about the hyperparathyroidism. I, too, was told I might have this recently. But. . .I didn't know there was such a corrrelation with the nervous system.

When they retested, I was normal. I'm wondering if I should be tested again, and if this really could be causing my nervous system issues?????

Did you have low vit. D levels, too? I can't remember if I read that. I had very low D, took a long-term supplementation, and nothing has really changed. I do, however, still take 1-2,000 mgs a day.

[Naeco]

Hey Mustang, I would definately have it rechecked if I was you. From what I was told, it's often overlooked because doctors typically wait to see if the calcium level continues to rise. This can be a big mistake because the current levels might be creating severe symptoms for the patient. The increased calcium levels don't necesarily have a direct correlation to the severity of the symptoms.

I was diagnosed with a Vitamin D difficiency also. They put me on 50,000IU once every 2 weeks. They said that can also cause an increase in calcium levels so they're having me wait another two weeks before continuing the tests but I had some troublesone calcium reading over the last 3 years and the symptoms started prior to taking the vitamin D prescription.

I haven't noticed the fine twitching that you mentioned but I've been getting really weird twitching in my eyelid today. I'm kinda feeling like the donkey from Shrek

I hope this helps. Good luck with everything!

-John

[mustang22]

Very interesting! I don't know if this "fine twitching" is really twitching, now. I guess it is, but maybe something else? That's funny about the eyelid. Seems to me my symptoms increase exponentially when I'm stressed or it's "that time of month." Gotta love being a girl! That being said, I can be extremely relaxed (like the month I was out of the country recently) and still twitch. . . so I know it isn't caused by anxiety, just exascerbated.

I do think I'll have a re-check, though! Thanks! By the way, do you have tired feeling muscles? That seems to be my other big complaint.

[Naeco]

I guess you could call it being tired but I haven't been able to describe what my muscles feel like that well because it feels like everything is hitting me at once. It mostly feels like it would after a heavy day at the gym, except without the muscle soreness. There's just no strength left in the muscle and it feels really fatigued.

I hope things start to improve for you soon

-John

[Shirle]

Hi John,

The very first time my son visited the Dr. for twitches, faling, fatique he was diagnosed immediately for ALS by simply looking into his mouth and he was told to try to touch each side of his cheeks with his tongue and to stick his tongue out...and the Dr. was correct in his diagnosis.
Perhaps you could mention this to your Dr.?

Shirle