Do You Have a Child with MS?

Did they check for Lyme Disease?

I agree it's hard not to freak out, and also that there are many possibilities. I work extensively with autoimmune issues, some in kids/teens and certainly plenty in adults. They tend to be cumulative - that is, the symptoms worsen over time, so we tend to see things more in older people.

But there are many things that can cause motor problems, muscle issues vs. joint vs. both at the same time. My kid, for example, had vague muscle issues that were written off because he was an athlete, and later they mushroomed into a vicious case of mono. (Spleen so enlarged that you could see it protruding from his chest just below his rib cage.) That's actually when we got help for immune system support and he's been phenomenally healthy ever since - rapid recovery, great muscle tone, joint support, etc.

I don't blame you for being outraged about the cash. Ridiculous, isn't it?

I think you could look into immune system support - all those autoimmune diseases can be helped in the same way. Since our experience with our son, we took steps to protect ourselves. We couldn't be happier with what we've done for prevention - my husband just had a very rare endocrine tumor, and it was because of his incredibly strong immune system and heart muscle that they realized he didn't fit the model of a heart patient (he had cardiac symptoms, but not all of them and not enough to explain the problem), so they kept on looking for a more definitive cause. If they hadn't done that, he'd still be in cardiac ICU getting nowhere and they'd have missed the cause, which was high adrenaline output from a freak tumor.

If you think your PCP is not being helpful, either by "not wanting to freak you out" with one possible suggestion or by not ordering the test to begin with, you might consider a second opinion or a switch to a new PCP. I know that's hard to think about right now, but if you're not being dealt with properly, you need to advocate for yourself.

I had a friend who has MS. She's not a teen, but what you described about your daughters symptoms sound spot on with her symptoms. When she would have an attack, she would have problems with her arms, legs, hands and feet. She would loose feeling and her limbs would be numb. She would have trouble walking because she couldn't feel her feet. She would drop things because her hands were numb. The treatment would be daily iv's of steroids. She would go to the hospital for 4 or 5 days straight and get a bag of steroids thru an iv. Then the attack would stop. She never knew when an attack would come on, but stress or illness seemed to bring on an attack. She gets an mri once a year on her brain. In between attacks she would lead a normal life. There are new medications on the market to treat MS. I don't know if your daughter has MS, but if does, I wish you all the best. Find a very good neurologist. Good luck and keep us posted.

If it's MS it's MS. I have 2 friends with it and they both live full and happy lives.

One works for the state and is a food stamp worker. She goes to work each day, is marred, doesn't have children because she married late in life. She is in her 60's. No problems. She has a bit of an issue with feeling her feet sometimes but hasn't ever had to use any devices or anything to help her get around.

My other friend is a psychologist and has had a long well funded life. She is retired now but when she worked she easily made a mid six figure income. She has 4 children and none of them have any symptoms or issues with anything. Two of her children are from hear early 20's and one is already a grandfather, making her a great grandmother. The other from her youth has 4 children and none of them have any symptoms either. Her two younger kids, still at home, are normal kids too.

She gets hot? She has a relapse very similar to heat exhaustion. She gets too cold? She has symptoms similar to restless leg syndrome. She twitches and has issues until she is back to normal body temp.

She has tried several different therapies and her docs are always presenting her with new treatment options. She knows what works for her and keeps her steady. She shuffles when she walks but blames that on being overweight...yes, she has a few pounds on her body but not an enormous amount. The shuffling comes from her not lifting her feet all the way and having a normal stride. No one will tell her that though. They don't want to hurt her feelings so we let her blame it on her weight. Steroids really help her function and have a pretty normal life. When she's taking them she can go out and do a bit of yard work in the cool of a summer evening, she painted her exercise room and guest room over a couple of weeks, she also re-tiled a hallway but that took a lot out of her and put her in bed.

Did I mention she's over 60? I think she'd have problems with some of the things she attempts even if she didn't have MS...lol.

Overall I think that today's medicine and the information docs have at their disposal make life so much easier and better for so many with life threatening illnesses. MS is a serious disease.

With treatment and maybe a few lifestyle changes a person shouldn't have to "suffer" through any of the MS issues. Medicate and take care.

I will say, you life in Arizona. If the heat bothers her you might start thinking about moving further north to a less hot climate. If she is socially entrenched then you need to make sure the school and your home and your vehicle are ready to keep her cool so the heat won't effect her so much.

I myself have mobility issues related to another genetic neurological condition. So while I don't have MS (that was the first thing they ruled out) I just wanted to send you support. It's very scary waiting for results.

Have you seen a neurologist? That's who ordered all my tests. The only reason I suggest this is you don't want to spend more money on tests that may be unnecessary. I would think you'd want a neurologist to interpret the results for you.

I hope she has something less serious than MS. Thoughts are with you.

Osohapi, it's really important that you stop letting these doctors punt your daughter around like a ball. What that's doing is putting off a diagnosis while your daughter's body damages itself further.

She needs the kind of medication that prevents further damage. It's critical.

Find a Children's Hospital and get her in there. They have a battery of tests they do to rule out everything else. If they come up with this diagnosis, then they start the medication.

Please don't let them delay this further. Hugs to you and your daughter!

Don't count your chickens before they hatch.
I've heard of one case where a child went from perfectly fine - to totally unable to walk - for 6 months - to totally fine once again - and has been fine since.
Doctors were baffled but then one did some sort of test and the problem turned out to be some sort of freaky bone virus.
It just had to run it's course - there was no treatment for it - but once it cleared up there were no more issues.

I have not known of a teenaged child, however, have a friend who in her late 20's became ill with MS. She says she has a great quality of life, but is still ill with it. She is now vegan and takes Juice Plus. She also grows a lot of her own vegetables. She is often does youtube which she shares, but I am only able to find make up videos from her. You are welcome to search her name and see if you find any of her MS videos that she shares, however, that is it in a nutshell...vegan, grow your own, & juice plus. Oh and she is medicine free. Here are some of her tags. #healing #dinalynn #inspiringhealthyliving #iamhealed

i have not known a young teen with it, but an older woman. she has woken up blind before, her sight camr back, paralized, that went away, and she has no sence of smell at all. that went away after she gave birth. there is a lot she will have to watch out for, and as an attack could come about at any time, she may not be able to drive. i know i wouldnt let her. i hope that isnt what she has, but look at the family. its a genetic disease that affects more women then men.

No personal experience with MS, but I have a friend with MS who plays soccer. Obviously hers is a milder form, and she has some kind of health routines she has to do weekly, but MS doesn't have to be debilitating.

All the best to your daughter.