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Please tell my son's doctor about your leg and back pain

evans_mom
0 Recommendations

My son will be 4 tomorrow and he has had pain in his right leg and lower back for about a year now. we have had a MRI of his spine, a bone scan, and x-rays of both of his legs. All came back normal. He complains about it almost daily, some days worse than others. It also wakes him up at night. His primary care doctor believes me and does what he can, but the specialists we have been to don't take me seriously. One told me to ignore him and another said that NF doesn't cause pain.
Next time we go in I want to be armed. I am making a file of anything I can find about NF and leg pain. Please help me out and say a little something about your pain and what is causing it. Thank you

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30 replies

guilty_spork

I have subungual glomus tumors in a couple fingers and docs SWORE there wa snothing wrong with me and the pain was just in my head. Tumors in my spinal cord, but when the docs did an xray they said it was just slight scholiosis. Remind your doctor that NERVES dont show up on xray and if he has somthing wrong with the nerves in his leg, an MRI would be the way to go. If he still refuses to listen... punch him in the throat five times and tell him its in his head... Seriously. ANY doctor who thinks that NF doesnt cause pain sholud be barred from practicing medicine. I'm soo sick of being told that my body doesnt know if its in pain.

GirlA

I hear you Spork. I am soooo sick of Doctors telling me its all in my head. I wish just for 5 mins they can feel our pain.

CindyLouWho

Evans mom, I'm not sure if it was on another thread that you had running... but did you see the mice study that I posted that showed that susceptibility to pain in NF was caused by increased excitability of sensory neurons which may just go part and parcel with NF? Just in case you were looking for a scientific explanation to give the doctor.

http://jn.physiology.org/cgi/content/full/94/6/3659

guilty_spork

TY cindy.. you have the best articles. I already printed out just about every article you have posted to shove in the specialists face this time. Thank you. Knowledge is power.

CindyLouWho

Thank you Spork. Have you considered getting those glomus tumors removed? My understanding is that they have a low risk of growing back.

Evans mom, I was wondering if your husband comes to these app'ts with you? Some doctors are so quick to judge women, apparently as soon as we have a child our brains leave our bodies and we become incapable of observation or normal reasoning. As much as it pains me to admit it, I find having my husband present makes it harder for some doctors to dismiss my concerns....which is ironic because my husband still hasn't read a single solitary article on NF! LOL Sometimes its good to bring reinforcements.

evans_mom

2 weeks ago we went to see the geneticist and I did bring my husband. I think that it did help a little. She wants to do some "fancy" blood work to see if something else is causing the pain. She said that NF doesn't cause pain and most tumors also don't usually cause pain either. I read on here daily of people on here that get stabbing, burning, aching pain. It is hard because I have to describe what I think he is feeling.
We are going to the pain clinic next month and I really don't want this dr to dismiss us. It would be a lot easier to accept that he is just going to be in pain if we knew the cause and couldn't fix it. I keep thinking maybe there is something there and they could remove it.

CindyLouWho

Who is this doctor? Is she affiliated with any of the NF clinics?

evans_mom

Here in San Diego we do not have a NF clinic. We have Pacificare HMO through the federal government. It is good but I don't know if they would approve going to the NF clinic in LA. I am going to try and if they don't than I am going to think about switching to a PPO.

Does anyone know which NF clinic in southern California is the best?

CindyLouWho

Okay that might explain it. I think that getting an experienced opinion is a better solution than killing the current doctor, as tantilizating as that might actually seem. It doesn't sound like this doctor is up for getting an NF education either so my guess would be that arming yourself with more information may also be pointless. I have come to the conclusion that it may not be realistic to expect much from doctors outside the NF clinics. The NF specialists know the current research and will hopefully have years of experience listening to NF patients and their common complaints. Even if you don't get definite answers you might hopefully get some reassurances from someone who knows what they are talking about. I say the quicker you can get an app't, the better.....otherwise you'll just be stuck banging your head against a brick wall indefinitely.

Good luck!
Cindy

evans_mom

Thanks Cindy, your probably right. I guess I will switch my battle to getting a referral to a NF clinic.

AuntieRo

Get to a really good doctor maybe at UCSD or Scripts. Get a really good MRI with and without contrast or whatever it takes. NF can and does cause pain. Maybe (and thankfully) not in all NF patients. I am 48 and had no real problems until about 2 years ago. And since then, just awful pain, due to tumors growing in my spinal nerves.
Bless you and your family. I love the super hero picture, that's great!!!

sweetiecat

My doctor also told me NF does not cause pain.. I am in pain 85% of the time. No one ever believed me that I was in pain before I found this group of wonderful people! Good luck.

guilty_spork

Actually cindy, I havnt officially been diagnosed with glomus tumors. It was somthing that i think YOU actually posted that helped me figure out what they were. Then I asked my aunt about it and she has had several removed over the years. My doc cant/wont send me for an MRI on my hands so i hafta wait till october when i see yet annother specialist to see if he can order the test and hopefully cut them out. Untill I learned about glomus tumors I wa splanning on cutting the fingers off myself.. Seriously. I wanna know why not one single doc, even NEUROSURGEONS never bothered to think "glomus tumors". I cant thank you enough for posting that. We should all get together and form a commitee or somthing to educate doctors on what NF is REALLY about. Its quite obvious that thier knowledge is both outdated and incomplete. I have learned SOOO much here and its both good and bad. Good because now I feel like I understand my body much more. Bad because its FRIGHTENING how little even the "experts" know.

evans_mom

Guilty_Spork- They won't send you for a MRI. I thought I was having bad luck with Drs. Try shoving bamboo shoots under their nails then maybe they will send you.

I am curious, what tests should we be doing on a regular basis?

guilty_spork

MRI and CAT scan. Dont take no for an answer. Call a lawyer. Your kid NEEDS an MRI at least every 6 months to a year along with the CAT scan. This is not open for debate. Make sure they know that.

mjmom

I know LA is quite a drive from San Diego, but I would seriously look into Children's Hospital in LA. They do have an NF Clinic. According to the NF, Inc. website, the hours of operation for that clinic are Fridays from 8:30 am to noon. We are part of the NF Clinic at Dallas Children's and have had nothing but great results. In fact, they referred us to a pain specialist for my son because NF most certain can cause pain. It's just a yearly visit at the clinic, but they refer us to whomever we need with regards to the various specialties (ophthalmologist, orthopedist, etc.).

I'm so sorry you've had to put up with a doctor who has no idea what he/she is talking about.

mustangsally510

oh, the pain is real! I've only recently started to get pain and have related it to this. Now I wonder if all the headaches I've had through the years, especially behind my left eye are realted? Doctors need to listen to thieir patients. Sometimes we do know more about our bodies than they do. If Doctors would only listen with their ears and not worry about what the journals say..there is something new to learn every day and if doctors close themselevs off to learning about their patients, they are as worthless as the diplomas hanging on their walls!

evans_mom

A MRI of the whole body every six months or just the places it hurts? I asked for one of the whole body and they acted like I was nuts.

555

I have NF type 1 I never remember not know that I have it. My mom tells me that has a toddler I would tell her it hurt ma ma. I am now 35 years old and I am in pain all day every day below is some info I hope it is helpful.

Most of my tumors are internal and have attatched to my spinal cord and cause severe pain and weakness in my legs. I have leg swelling. I need a power wheel chair to go any moderate distance. I take heavy narcotic pain medications 4 times a day along with several other medications to manage the pain. that is in my low back and legs.

I agree that you need to get MRI's I get two a year unless i notice something new than I get more.

Good Luck to you

PVA

EvansMom,
Maybe we should push bamboo up their fingernails. I get that feeling all the time. Maybe it would help them understand us.
As for an MRI of the whole body, they will look at you like you're nuts cuz it takes around 2 hours just to do the brain and the c-spine.

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