Where do I go when the doctors I've seen diagnose me?

[Hallucination]

I'm 19 and for the past 3 years I have had extreme neurological health issues. Muscle weakness, strobe light vision, feeling like i'm unable to conjure a thought, and most of all the feeling that 4 certain vertabre in my back refuse to move with the rest of my spine as if there stuck. I have severe back pain and the physical therapist said I have the back of a 70 year old and it baffles him how that is possible stating that is most be a genetic/brain problem. It feel like my back muscles don't work the way their supposed to and oddly enough those 4 vertabre continue to crack and make really loud cracking noises and it feels like their trying to revert back to a normal and healthy spine and it feels like my body is slowly transforming and sometimes when my spine cracks i feel my entire consciousness and perception of the world shift.

I also have a bunch of other pains and problems and my body that i feel is tied into this that I have no need to go into.

The question is where do i go for help? I've seen a neurologist, aswell as my normal doctor and when I first complained 3 years ago I got an mri done which showed some spinal degeneration and spinal stenosis. That's all they've really done to look for the problem i feel and now they all try to tell me that everything is in my head and that i'm depressed and anxious which is OBVIOUSLY true but I know deep in my heart something is serverely wrong with my body and i'm sick of going to therapy as if it's going to help my medical problems and being treated like some kind of liar.

Where do I go, where can I get more help on finding out what is wrong?

thanks.

 

[MsKatee]

Dear 'H',

I don't have any great advice as to where to go next, but I wanted to send my best wishes and support! Being treated like a liar stinks! I have been going to my local primary care doc for over a year now complaining of horrible low back pain. He under medicated me (in my opinion), and lessened my MRI report, stating that the issues were "mild" and "non surgical". He has refused to even give me a referral to a Neurologist for a second opinion! To top it all off, I was "refused" by the Stanford pain management clinic 2 weeks ago. Yippee! Not.

Last week, I took my Mom (she's an RN and knows my doc personally) and my boyfriend (who has seen me go through this and is fed up himself). The doctor finally started me on a regimen of medications (including the fentanyl patch) that are working quite well! He is having his nurse research a neurologist in my area that takes my insurance and promises a referral by the end of the week. I'm not seeking surgery, however, I think a primary care doc who treats basic neeRAB (although a very nice man) is not the person I want deciding my fate in an area that is clearly not his specialty!

So I guess with all this I'm saying that chronic pain is not easy to diagnose or treat, but you certainly need a second or third or fourth opinion. Nothing is worse than being treated like a head case when you are in real pain. My doc used to just throw anti-depressants at me and it drove me nuts! Yes, I'm depressed, but it's because I'm in pain....! Treat the problem and the symptoms please!

I wish you the best of luck. Please be your own advocate. The squeaky wheel gets the grease, so don't be afraid to be frank (yet always polite) with your doctors.

Please keep us updated,

Heather

 

[feelbad]

did they ever actually even MRI your brain and also using a contrasting agent too, esp IN the brain area? this would have just been to simply look for any more obvious abnormalities or certain signs of a possible more in depth type of neurological impact type of condition too? also, any MRI that seriiously is even more than even one or even six months old can really show alot more now esp if ypou have some real true level of a more deterioratiing type of spinal process going on? i would seriously either ask this current neuro or ev4en better just your plain old primary doc to actually ahve botht hat braina nd the full spinal repeast MRI done again or as new witht hat brain,and make certain it does get sone with a contrating agent too since it just does help to bestter highlight areas that either wont show or wont always show as well upon scans.

you could even possibly have two totally seperate and non related types of situations going on there too? not all symptoms always naturally 'go together" even tho you just 'have them" at the same time type of thing either. just a coincidence in many cases there. so it really does need to be approached both possible ways too? even starting with a different neuro with a completely different set of fresh eyes and a totally different way of looking at you and your findings that will pop up on any new MRI would seriously help since no two 'specialists" or even primary docs are even close to the very same in most ways that count? their overall knowledge really comes sooo much more from their own experiences in just seeing the patients they see every day? some see alot more of a certain type of problem than others too? thats just unfortuently for us, the patients, the way specialists and docs just are.

what you described with the visual/head disturbances going on up there, is that ever actually followed up with any real headpain or ONLY the visual symptoms and muscle weakness alone? just exactly what particular vertebrae are you talking about that feel like they are 'fused' or non mobile?? what exact level is that, c spine or other?

either way i seriously think getting brand new MRIs after three long years of already being told you actually even have/had deterioration show up really IS most needed after this long, just to really see and with a contrast much deeper into that area again and also if that brain was never bothered to even look at considering your symptoms, that just NEERAB a scan really, since a TON of possible spinal issues are just very highly ongoing and progressive in nature and would get worse with time. if you were also only 'told' about what showed up(or didn't) in your own MRI report but did not actually see it or read thru it yourself, you still in some cases do NOT even know if you were simply even told everything IN that one report either?? this is just a little bit of a sick thing that seriously gets done mostly by actual 'specialists' in keeping certain findings out of the conversation? what any actual specialists impressions are of it(the films and the report) is in some cases ONLY what YOU as the patient will even GET told? always always obtain your very OWN copies of any and all testing result reports, always. this way you at least KNOW what was found in that summary at the end that if any given doc simply has not had even enough experience in his pratice to simply actually KNOW whatever is a finding actually is a big one or could impact a patient in a certain way, they will not tell you,mostly because THEY don't know how crucial it is themselves. alot of variables there let me tell ya.

but getting repeats or new MRIs and depending how things go, also seeking out that 'new' different perspective neuro may help in finally finding out at least 'some' of your answers here hon. but DO get new MRIs. good luck and please let us know how things are going? Marcia.