Fibro? Arthritis?

[susiestar]

Jess came up with a new, nasty, rather scary symptom last night. I don't think it is so much related to the shaking, though of course I am not positive. It is a problem that I had esp as a teenager/twentysomething.

The muscles/ligaments/tendons in her back, arms, shoulders, hands ALL became super tight and rock hard. It was literally like an iron rod where the muscles etc... should be flexible.

Her hands were esp hard for her to handle as the tight muscles etc... pulled her fingers into hyperextension. Instead of how you hold our your hand and your fingers are straight or curve toward your palm, her fingers were bowed back. Twice I had to actually bend them for her because she couldn't. She couldn't even put medicine in her mouth or hold a drink when she needed one.

I hate this because I know EXACTLY how it feels. My hands were not as bad as hers with this symptom, but my legs were often much worse. I missed over a half day a week in high school because my legs would spasm this way and I couldn't put weight on them. I know that they didn't do much for me but rx muscle relaxers, cortisone and occasionally pain medications and shake their heads in confusion.

I did call the doctor, but wanted to know if any of you have had/seen this kind of thing and what if anything the docs called it or how they treated it?

Thanks. I really just wish I could wave a wand and take this all away from her.

 

[DaisyFace]

Susie--

That poor girl!

At this point - are you researching rare diseases? It's all gotta add up to something...

And maybe after they figure it out they can FIX it!

 

[Marguerite]

hypocalcaemia?

Marg

 

[susiestar]

Hypocalcemia might be a cause. I will try to get her in for a blood test, as well as working to increase the amt of calcium and D she takes. Like me, they upset her stomach, although not nearly as bad. She does eat/drink a lot of high calcium foods. Since drinking milk or having it on cereal disgusts her, we do the orange juice with calcium, yogurt, low fat pudding, cheese, etc.....

But I know my body isn't processing calcium/D properly and we have tracked low Vit D levels back to right after I had Wiz. So while I doubt anyone knows if it runs in the family, or why my body won't use it, it does seem possible that Jess might have the problem also.

Thanks. She was pretty freaked out last night. I put muscle rub on her hands/arms/back and had her grip a hot rice bag to keep her hands from hurting from being bent backwards so hard.

 

[HaoZi]

I have no ideas, just wanted to let you know I'm hoping they can find some way to help her soon.

 

[hearts and roses]

If she's not getting enough magnesium it could cause varying degrees if muscle spasms, tension, flexing and cramping. If possible I would try a supplement. Magnesium supplements are better absorbed when taken along with calcium. Her dr can also check her magnesium levels beforehand. Have you ever consulted with a naturopath? Please forgive me if this is a repeat question. Just trying to help. Big hugs to Jess.

 

[flutterby]

Have you looked into muscular dystrophy?

 

[flutterby]

http://www.nlm.nih.gov/medlineplus/ency/article/001424.htm

 

[Hound dog]

Have the docs check her calcium, potassium, and magnesium levels. Especially since you have issues with the calcium absorption.

I might have asked this in the past..........but has anyone had the foresight to blood test and genetic test you two across the board?? I know that they may not find anything......but most of the blood tests can be run with about 5 vials of blood......and the genetic tests can be done from those as well I believe. Of all people, I had a frustrated, and thorough, psychiatrist do this for Travis. He was one of those who wanted to rule out anything medical before treatment. And yet again on this set of blood work the phlebotomist remarked at the thickness of his blood........and when he had that stroke at 18 (when no 18 yr old should be having a stroke) that popped a red flag up in my memory and got me started looking.......and back to a neuro who was willing to do the blood work for the polycythemia. Sometimes dxes of rare conditions come about this way. Like his psychiatrist said........the boy had so many different issues going on at once, it could make it easy to mask an in your face diagnosis unless you had some idea of what you were looking for. I had been asking the right questions all along.......I just hadn't found the right doctor willing to think outside the box and connect all the dots. Once we did everything fell into place and made sense. All his issues are related to each other although they involve more than one body system and by diagnosis alone you'd not guess it because they all stem from the common cause, the polycythemia.

Nichole still has her very odd set of symptoms.........and childrens did the same sort of genetic testing on her as Travis' psychiatrist did on him......only so far nothing stands out. But then hers too seem to involve more than one body system so who knows.

But honestly, if the doctor would do it, it's worth it to have it done. Then if nothing else you can at least say she doesn't have A-Z, so now let's look somewhere else.

Treating the symptoms is good, but being able to work from a known cause gives them much more information to work with than just symptoms alone. Since many of her symptoms are similar to yours or those you've had at similar stages in life, it suggests a genetic component.

Poor kid.

Hugs

 

[susiestar]

Thanks all. I haven't been able to find a naturopath here, or actually I should say a reputable one. I have talked to many but they don't seem to be routed in reality or any sort of scientific exploration. One was happy to say it was one of a few things, but the "solution" was to have both Jess and I say some sort of chant as we held crystals in our hands. It didn't hurt anything but it also didn't help anything.

As for tests, getting ANY doctor to do ANY testing has been like pulling teeth. Even getting a cbc and sed rate has been about as easy as crossing antarctica in shorts and flipflops - just ain't happening.

This is another reason I have changed docs from the big pediatrician practice in our town. Sure they have the docs, a lab, xray facilities, etc... all in their building, but they won't DO anything iwth those resources for teen girls. I wish I was exaggerating. it is why we see a doctor in a little town about 20 min away. I am expecting to hear from them Fri or Mon about this symptom. So far all the advice, recommendations, etc... have been exactly what seems appropriate to me.

I will ask about screening for any/everything and genetic stuff also. It seems very logical to me that she may be looking at some of what I fight, and if we can get it early with her it might not limit her world the way mine is limited. Esp if we can arrange to NOT have her spend 10 yrs on high levels of cortisone at the same time as having low levels of calcium and vit D - she might get to miss the bone problems that way.

I will research your ideas/suggestions and see what we can find. Thank you all very very much.

 

[Marguerite]

If bloods are being done, get Vitamin D levels checked too. Despite Australia being a sunny country, we have an epidemic of Vit D deficiency here. And you're coming out of winter...

Marg

 

[HaoZi]

Susie, look for a "genetic counselor" in your area, that's who we were referred to for the blood testing that showed Kiddo has something odd going on in her DNA (though no one knows what it is).

 

[everywoman]

Have they done an MRI on her spine---particularly the cervical area? My symptoms were exactly the same when my spinal column collapsed and pinched off my spinal cord.

 

[susiestar]

They did a head and spine MRI about a year ago - because of the tremors she had to be put under anesthesia, not just the sedation that they use with nervous and/or adhd kids. It ended up being rather confusing. The docs said there was "nothing abnormal" but that is NOT what the report from the radiologist said. I had to fight to get that report and it noted some small things that they couldn't really identify or figure out, but every doctor said it was "no big thing". There was a spot of some sort on her parotid or parathyroid gland (I know they are different, I just cannot remember which one it was for the life of me.) We saw a pediatrician endocrinologist who said that it was "clear" that an adult radiologist read the MRI because pediatrician radiologist would know that the spot is tehre in all normal pediatrician patients. Seemed odd to me because I couldn't find any more info about it on any kind of search and because the MRI was done AND read at our children's hospital.

So it is yet another oddity that leaves me with questions and no answers.

marg, we will def have the Vit D checked with everything else.