help - i'm only 15 - its been 3 years and i need help!

[abcdefghij123]

i have had a muscle problem for 3 years, it started off as just shaking, physically of my arms and hands.  it now makes me get bad headaches that last the whole day, making me feel like someone is pushing my head together to pressurise it.  and i get aches in my legs and arms and sometimes a weird stomach muscle pain.  i also get random muscle firings every now and then.  i'm off sport because i can't cope with it because any exercise makes the pain in my legs worse.  i need help, i've had 4 scans, thousands of blood tests and so many doctors and i'm still a mystery.  i'm 15 and its ruining my life, i used to love sport.  help, please.

[sgloon]

Actually, one is not in a fetal position during an LP.  I had one recently and also one about 15 years ago.  Both times were lying face down.

[sgloon]

Actually, one is not in a fetal position during an LP.  I jsut had one recently and also one about 15 years ago.  Both times were lying face down.

[Corvin]

It's a blood pressure pill that was accidentally found to help some people with headaches. But this didn't help me either. They may not even have you try this, I just remember it was one of the things they had me try.

[abcdefghij123]

well, its been affecting my sleep as well so if it doesn't help the actual pain helping me sleep better is still a good thing.  i'm taking them at night so if they make me feel drowsy i'll be going to sleep anyway.  gcse is the exams we take at age 15-16 which are fairly important, they go on a record and CV etc.  i'm very worried as when i write essays my hand cramps up and really hurts, so if that happens in my exams i'm in trouble.  what is propranolol?

[Corvin]

I've read they use that for pain, I just can't say how much it will help, I've taking other tricyclics, that are sort of close to amitriptyline, and they didn't do much for me except help me sleep better???

But I think it's something you can definitely try, and see if it helps, who knows maybe you''ll have a different reaction. I don't think a low dose of tricyclics will make you feel worse, maybe a little sleepy possibly, but not anything bad. Other thing they may have you try is propranolol.

What is "GCSE"?

[abcdefghij123]

hey, i'm just about to start something called Amitriptyline (sp) which is actually an antidepressant but has been known to help pains with muscles and other stuff, i'm starting at a low dose due to gcse's at the moment, but hopefully we'll see if that gets anywhere, we're still trying to chase up the muscle biopsy. do you think the amitriptline will help or make things worse?

[abcdefghij123]

great, thanks a lot, i'll try get some progress on those tests etc, thankyou:)

[Corvin]

It's used most often to diagnose infection in the CNS, infectous menningitis and encepholitis are a few the only things it nails 100%, and Intracranial Hypertension.

The things they study are the opening pressure, white cells, protein&enzyme counts, glucose, presence or absence of red blood cells (shouldn't be there), and they can culture it and check for pathogens.

So even though it only nails CNS infection 100%, it is a useful tool in the diagnosis of virtually any condition causing inflammation/damage to the CNS. Second only to MRI. But MRI is sort of useless for diagnosing CNS infection, unless the patient has an abcess that is noticable on a MRI.

[abcdefghij123]

wow that sounds complicated!  what sort of results and diagnosis' are found with an LP? thanks for the information, its really helpful.

[Corvin]

Oh, I forgot too that during the LP procedure you have to remain in a fetal position.

[Corvin]

Sure, a LP is usually done in the emergency department of a hospital. Your go in and usually just remove your shirt so they have access to your back, and put on a gown that opens in the back. They may or may not give you a sedative, sometimes they just ask you if you want one or not, but being younger they will probably just give you something. All the LP testing equipment comes in a kit, first they have you lay on your side, and then the doctor feels your backbone for where they should insert the LP needle, it's usually between the L4/L5 area of your lower back, sort of where there is a dip in your back above your tailbone. They do it there because the main spinal cord ends at about L3. When they find the spot then they inject a local anesthetic (lidocain) and then they scrub your lower back with an antiseptic solution for a couple minutes, and then put a paper drape with a hole in the middle of it over your back.

Then it's time for the fun part, they start to insert the LP needle. This is somewhat painful but it's not to bad, it's sort of like if youv'e ever had someone take their knuckle and dig and twist it into your backbone real hard, just more uncomfortable than actual intense pain.
Once they stop pushing the needle in the pain subsides, but it still hurts a little. Then they measure the opening pressure, and they fill up about three small vials with CSF, pull out the needle, and put a large bandage on the area, and your done. The one I had my back was sore for a few weeks after, and it takes a few months for the muscles they poke through to heal 100% again. So it's not something they like to do on just anyone without a good reason, but if you've had an EMG, it probably wouldn't be much worse, just you get one big poke instead of a bunch of small ones, unless you just had a surface EMG. I don't know.

The collection of CSF would be considered a fluid biopsy, and a lot of tissue biopsies are done also with long needles. Biopsies, they usually want some kind of other medical proof, to order the biopsy, so as to not subject the patient to an uncomfortable, expensive, and possibly unnecessary procedure. So I guess you'll have to discuss it more with your doctor, if it's something you feel you should have done. I think in your case a muscle biopsy would be better than an LP, at this point, because I don't think their is enough clinical evidence to do a LP. Well and that's why they're reluctant to do a muscle biopsy also because they think your EMG should have showed an abnormality.

[abcdefghij123]

hey again, i understand what you mean about doctors, they seem to just all say the same thing when they don't know what to do, then order pointless scans and tests! i haven't had any results that have actually come back with anything useful yet.  i've had all the checks of levels in my blood like calcium etc, but thyroid and glucose i'll have to ask about, thanks.  also i understand completely what you mean about pedeatric consultants.  its hard though because the more advanced consultants that i want to see that may be of more use can't see me because i'm under 18, very annoying! anyway, thankyou for all your help, but i was just wondering if you could explain the lumbar puncture test? is it similar to a biopsy? thanks again :)

[Corvin]

HI,

That's great, they did do an EMG. I think your right, a person can do all the blood tests and scans in the world, but a lot of times the best diagnostic tools are the micro examinations of biopsies. That's how I finally got my diagnosis. Examining the Cerebralspinal Fluid (CSF) by having a Lumbar Puncture (LP), is also a really great tool in diagnosing conditions affecting the CNS. (I'm actually thinking about having another one of these)

Your symptoms although could be explained by a metabolic disorder also.....so a full metabolic workup, and obviously checking your thyroid and glucose would be important.

I got to thinking, I suppose in England they don't call Internal medicine doctors who treat young people, Pedeatric Internists, but I'm sure you know what I'm saying. Basically a physician that specializes in people under 18, that has a broad knowlegde and experience of the etiology of diseases, that usually sees people when they are really sick in the hospital, but also does clinical consultations.

Take care :-)

[abcdefghij123]

hey, no it did not sound rude at all! any help is greatly appreciated, i've had an EMG and that all came back normal, i've been trying to chase up a muscle biopsy however the consultant at great ormand street hospital said there was about a 20% chance of finding anything, i disagree but i'll see if i can get one just to see.  thanks also for the creatine kinase idea, it sounds quite related to the muscle problem so i'll try get that sorted.  Thanks again, :)

[Corvin]

Hi,

Creatine Kinase (CK) is an enzyme that is the by product of the breakdown of muscle in the body, any muscle tissue, but including the heart. Heart attacks are more common though than say a metabolic disorder where the body breaks down muscle for energy or a neurologic condition that causes inflammation and/or wasting of muscle.

                           http://en.wikipedia.org/wiki/Creatine_kinase

When I read back my first post I thought it may have sounded rude, I hope it didn't come across that way, I was amused by doctors and how they do a lot of tests but sometimes miss the ones that matter. I hope you can find a resolution to this.

There is more invasive tests also like EMG, Lumbar Puncture, or even muscle biopsy, but these will have to be decided by your doctor. Unfortunately there is many conditions that could account for your symptoms so it may be a somewhat frustrating process of elimination, or even may take an evolution of symptoms.

You could also try reposting in Undiagnosed Symptoms Expert Forum, or the Neurology Expert Forum and see what kind of hits you get. You could also maybe get a referral to an Pediatric Internist who could piece this stuff together better for you beings it's chronic and is affecting your ability to function. Take care and I hope you can get some answers.

           http://www.medhelp.org/forums/Undiagnosed-Symptoms/show/106

           http://www.medhelp.org/forums/Neurology/show/135

[abcdefghij123]

hey corvin, i'm not sure about creatine kinase levels, but i thought that was for heart attacks? i may be wrong, thanks for the idea though, i'll try find out.  

[Corvin]

Hi abcdefghij123,

Did they check Creatine Kinase levels in those thousands of tests?

http://www.labtestsonline.org/understanding/analytes/ck/test.html