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20 yr. old with entire spine arthritis and severe herniated discs...please help!!!

Started by mandiole on 06/18/2010 10:01am

I just turned 20 about 2 weeks ago and 2 days ago I found out I have severe arthritis starting in the middle of my head and goes down to the bottom of my tailbone. I also have several severe herniated discs. I'm in constant pain and no longer have control of the left side of my body (including my left eye) and sometimes my right leg goes along with everything else. My legs and my left arm will just go completely numb with no warning whatsoever. I fall all the time and sometimes I lay on the ground for 3-4 hours until either i get feeling back or I get ahold of someone that can come get me up and move me to the couch (which rarely happens as I'm in a new area where I don't know anybody). The doctors have me on a medical overdose of oxycodone which makes me feel sick all the time. My insurance company is being slow so I can't even get in to see the neurosurgeon for a minimum of 3 more weeks. I'm too frustrated and I don't know what to do anymore, if i can feel my limbs it's excruciating pain but if I can't feel them I can't even take care of my own basic needs. Any suggestions on what I could do to help relieve some of the pain and numbness until i can see the surgeon??? Thank you for your time!

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Sorry to hear what you have been going through.

I think that you should also see a pain management doctor apart from a neuro. Not sure of your insurance coverage, but these are generally covered, partially or in full.

Also I'm not sure if you are allowed to go on Physical Therapy, if yes, it does help a lot of people.

Obviously without saying other aspects like sitting (kneeling chairs), good beds and most importantly good diet , eating healthy with low sodium also helps a lot.

I am not a doc but a sufferer like you, but this community has given me a lot of motivation.

Chin up, do your best. You'll feel better soon.

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I agree with the previous person: I think that you should also see a pain management doctor apart from a neuro. I am not a doctor either, but a neurosurgeon see's people for Nerve problems. You might have nerve problems that are causing the weakness. Do you have a primary medical doctor who can refer you to a pain specialist? The pain doctor can prescribe a TENS unit(research it) so that you do not have to continue to take pills for pain.

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Sweetie, I don't think your Dr has you on a "Medical Overdose" of Oxycontin. I am not being a smart butt here but Drs' do not "overdose people, "People" overdose themselves. I am sorry you are having problems and the pain is unbearable I know, I suffer "Full Body Pain" and have for 11 years now. If you feel the need change Doctors, this is solution # 1. I have to question which part of you feels pain as the other parts are numb? Numbness is a sign of Neurolocical damage(nerve damage). If the oxycontin is making you sick take less of it and ask your Dr for Promethazine for the nausea and be sure to eat w/it. I am not an expert but I will share my common sense opinion with you. As I said I have been through 11 years of pain management, physical therary, chiropractic treatment, cognitive therapy, trigger point injections, caudel epidural blocks, lumbar blocks and many meds later...I still have full body pain. A pain pump has been suggested to me and I refuse this because I think they are dangerous! If you can avoid surgery and it is best at your age to avoid surgery, you should use every other avenue available to you. Solution # 2 is research as much as you can John Hopkins online is an excellent site and search until you find what you feel is your Doctor, your solution to your pain. I am still working on this myself. Good luck to you, I wish I could offer more advice. I can only say in ending there are people out there worse off than both of us and do not give up hope. Hope is the key!

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I'm so sorry to hear you're having such awful problems. You must feel overwhelmed.
You didn't say what type of arthritis you have (I'm guessing ankylosing spondylitis). The reason that I say this is because what you describe somewhat matches what I go through and my diagnosis is A.S. For me, the pain comes and goes. I've been on a bad spell for about 5 months now where it's really painful. But I've had other times where everything was manageable. I also have herniated discs. It's common to have pain in you butt and legs because those discs are pushing on your nerves.
Having gone through this for many years, I would say don't be so quick to jump on the operating table. There are things besides just taking strong pain meds that might help you. I just had steroid shots in my back along with a procedure where a numbing agent is injected near the nerves that go down towards your legs and it makes the pain diminish a lot.
It stinks that you're dealing with this at such a young age. You should be out dancing and having fun, not living on the couch trying to find a pain resolution.
My best advice is to use good body mechanics. Don't go bending over to pick something up - use your legs. As for the tingles and stuff - the only thing I've found that works is to shift my back a little and try to find another position.
Best of luck!

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Thank you for your comments. I'm not sure what type of arthritis it is, i'll find that out when i see the neurosurgeon...I really don't want surgery I've already had 7 in my life and I can't stand it plus I hate narcotics with a passion. I've done the TENS unit and it didn't do anything, I've also done physical therapy for 7 months and that didn't work either. I got them to switch my medication so now i'm on vicodin, percocet, and morphine intermitently (morphine only if i'm having a REALLY bad day). Hopefully I'll get some answers soon, i'm having some more imaging tests to compare from the last ones. The doc's told me that the arthritis itself pushes on my nerves along with the herniated discs. I'm not sure if they're just blowing smoke or what but it seems like every time I see the doctor they add more things that are wrong and it's really starting to scare me. Today they told me that I might be leaking spinal fluid which I didn't even know that was possible! Thank you all for your time and your advice, it's nice to know that there are other people out there that have been through it or are going through it to talk to and compare notes! I greatly appreciate it!!!!

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Dear Mandiole : i read your history ,cause of your illness and diagnosis is not clear .i recomand tobe visited by a rheumatologist in association with a neurologist as sooner.Meanwhile if you have no history of gasterointestinal problem you may use Indometacin 25mg orally three times/day +Omiperazole20mg/day+Cap.Gabapentin100orally three times/day.

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Hello mandiole

I know this is later than your post but here is the best possible resolution:
Try Dr. Richard N. Ash, 800A Fifth Avenue NewYork, NY T-212.758.3200
This man is the Future of Healthcare TODAY.
His website is
www.ashcenter.com
He can help with arthritis, disc problems and so much more.

You can hear him live through that website or listen to him on WOR710 AM (NY)
There's an iPhone app named WunderRadio, you can also get him on that.
He has a radio show every Sunday 5:00-7:00 pm EST. You can call in at T-212.528.0129

Nobody could help me for nineteen years but he did and WITHOUT surgery!. Good luck.

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I know this is late since your date is 2010, but maybe this will help---ever heard of the X-Stop??? I heard about this procedure on TV med. program. Ask your Neurosurgeon about it.

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