[vinny19]

Hi,
I have a long story but basicaly had a motorcross accident in 2003 with severe rt lower rib pain. Within weeks had severe pain with bowel movements and hunger pangs or any gas. Was told it was g.i. and told i had IBS, IBDm Nediteranean fever, dengue fever, told it was my gall bladder over a period of four years and lost everything including medidical insurance as I could not work. I had a doctor order an mri in 2008 and was found to have bumerous spinal issues but c spine had a c 3-4 tiny protusion and c 5-6 disc eccentric to right flattens ventral aspect of cord results in moderate narrowing of rt nueral foramen.
I had not had adaquate health care and have county and am fighting withthem to get the care I need. I was diagnosed with accute intermittant porphyria during this period. I am suffering beyond words and they do not seem to care about my pain or treating it. I am awaiting new mri results on neck and had l and t spine mri previously had in Nov during a icu stay for septis. I can get results if you would like them. I had a bulge l5 s1 mild narrowing of neural foramina bilateraly. My entire body spasms and is in severe pain. I have trouble breathing and my abdominal and chest muscle are constantly spasmed and tight. I have trouble swallowing and a sore throat.I just would like to know what treatment to demand, they have not refered me to a neurologist and I have asked many times. I am at whits end and was denied ssi and medi-cal due to no expert diagnosis but now how legal rep. so am trying to get all my ducks in a row. Please any advice will help

[Leesa]

If you could get BOTH your latest written report of the cervical spine and also the latest MRI of the thoracic spine, it would be helpful. Post it them so we can actually see what's going on. That would really help alot. Otherwise, all we can tell you is to have your doctor refer you to a NEUROSURGEON -- NOT a Neurologist. There's a difference.

If you can't get your doctor to refer you, try to make the appt. yourself. Tell the office girl at the NeuroSURGEON'S that your doctor refuses to make the call, so you're doing it yourself. Take your films with you -- you can pick them up at the hospital where you had them done. That's where you get the reports that you can KEEP for yourself too. You can't keep the films (MRI) unless you pay for them, and they're usually about $5.00 per sheet. It might be a little more by now, but not much.

I wish you the very best. Keep us posted. Hugs, Lee

[vinny19]

Thanks Leeza for your quick reply. First problem is I have county medical and I have not been able to get any referal. Only reason I got first Mri in Nov was I got so septic and in renal failure from diverticulitis my lactate was 5.7 and er was gonna send me home with Motrin until I insisted on bloodwork and results had me in icu. After sixteen hours of phone calls and bugging everyone from head of HHs to my county supervisors office I got the mri for neck.

The doctors show zero respect and I was treated with severe disrespect and unpressionaly, or not treated. Took four weeks to get referal to urologist for renal and possible fistula issue, which I still have not been even given and apt yet after numerous calls. Had mri on tues 1-15 so results soon but no apt with my doctor until 2-8.
Before spinal injuries had rt shoulder rebuilt for chronic dislocation and it seems the nerves pinch due to tightened shorten muscles from surg. I think it was called pudiplat?
Oh and have fluid from ears with swollen nodes in neck, armpits, groin and under collarbones with zero attention from my doctor yet. Pretty complicated I know and no one will look at the entire body. They just want to pick one ailment and ignore the rest, meanwhile I find it very hard to function or take care of myself.
Oh lost wife along with business during this time not able to work so I have to care for myself. Also the Porphyrai is a nuero disease and I have to be on a special diet, thus the need for neurologist but it sounds as if I need both.
There is more but like I stated, it is a long story and these are the important factors. Thank you again...

[Leesa]

Good grief. You've really had a rough time. I'm so sorry. I think it STINKS that your wife ditched you during this time. That's a pretty rotten thing to do.

You can get your MRI report at the hospital where you had it done. Just ask for it (are you in the U.S.?) It actually belongs to YOU. You have to sign a release, but they'll give it to you -- again, if you're in the U.S. You don't have to wait until you see the doctor.

Again, you've been thru the mill. I hope someone will listen to you SOON. The care you're getting is unacceptable! I'd keep calling, til I got someone to do something about it! Don't give up! Make a pest of yourself if you have to. You need to see the urologist! By the way, you don't need a "neurologist." You need a NeuroSURGEON. There is a difference. So make sure you get the right one, ok??

Hope to hear from you soon when you get your MRI report. God bless & take care. Hugs, Lee

[mg neck prob]

[Hi Vinny --first let me say Im so sorry your dealing with all this pain on top of losing your wife and bus. What area do you live in? To me you need to seek out a hospital patient advocate to get the attention you deserve its bad enough to seal with all the pain but fighting to have all these issues addressed indeed is making things worse. Dr mention having a neck fusion ?

[ginnie]

What leesa said is absolutly correct. A neurosurgeon, and get your records. I am so sorry you are in that much pain. If your doc. won't recommend someone, you can call your local hospital also in the patients advocacy group. They may be able to help get you into a neurosurgeon that way. You can also post near where you live, and maybe we will know of doctors in your area. We will be here for you. ginnie

[vinny19]

Thank You all for your concern. I did and have been bugging everyone and found today the c spine Mri results are in for doctor to review.SAee urologist in morning. It has been tough and I have had more loss but it also has allowed me to become real. I never had compassion was a perfectionist in work and was pretty self-absorbed. Met the love of my life after wife left who had just had a lung transplant, together five years then engaged then she went into rejection. lost her last year, but seriously am not full of grief but grattitude. Made me realize how the best things usually are short lived or sumtimes never realized or dreams lived and I had the dream of true love and that is forever. I am whole now although with a heavy heart.
Sorry enough of that. That is why I had waited to get myself help but am my best and only advocate.
I will get Mri result tomorrow or try anyway. Will post results and cannot imagine them any better since last as since I was t-boned by an uninsured driver and hit head on b piller and lost four teeth. I do have separrated facet bones and not sure if from all sports injuries or facet syndrome and guess neurosurgeon could tell.
The reason I mention a neurologist is I have accute intermittant porphyria which is an extremely rare neuro and hematologic disease and was told affects nerves and could be agravating injuries, but will insist on a surgeon.
Thanks again. Lotsa hugs

[vinny19]

I live in Sacramento Ca area but with county medical am somewhat limited but do have local Sutter Medical group which has been outstanding other than most ER doctor. I have had them before and in hospital and was very happy with both level of care and an awesome nursing staff, who do most of the hard work.
Thanks

[ginnie]

I was glad to hear about your life. It is true what you said. Compassion developes when you yourself come up with a serious medical issue. It changes a person profoundly. We will all be here for you, and hoping that there can be some resolution. Also nice to hear that the medical staff you have had so far has been great. You are in my thoughts and prayers. ginnie