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Need advice - don't know what to do.

Hi -- I have a whole host of symptoms,.. that have been going on for the better part of 6 years.

The 'major' ones are:

Chronic pain , 24/7 -- in my neck, in the middle of my back, in my lower back.. even in my hips at times.

Weakness -- pretty much every muscle in my body feels shaky/weak -- holding my arm over my head with a blow dryer will wear out my shoulder muscle in seconds.. -- you know the 'DUI' test where you hold one leg out a foot off the ground? Well if I do that my upper leg and lower abs feel like they are about to give out after just seconds, and sometimes literally visibly shake (yet my leg is strong?) I could go on with the weakness.. even my fingers don't 'work' right anymore.. just noticeably uncoordinated , get tight, muscles in hands burn from squeezing a pump sprayer handle (which should never happen.).

My spine pops SO much -- with most movements of my neck it is stiff , painful and it sounds like it is grinding in most directions. If I breath in deep I feel a pop in the back near the middle spine (close to the scapula, but the pop is on the right hand side of the thoracic spine).. again, could rattle on here -- but my entire spine pops and cracks quite unnaturally. (I am now 34.. this was happening at age 27 (2007).

Some related or maybe unrelated things:

vision -- A hugely distressing problem that the eye doctor has no answer for. Hard to describe, but I see halo's around all lights (especially at night) -- I see starbursts around lights.. even during the daytime. IE: car lights in broad daylight streak out in all different directions. The worst part is what I'm looking at has this quick yet subtle 'shaking' to it.. at all times. Like my eyes are moving around VERY slightly, and very very quickly - like a shimmering/flickering, but my eyes aren't moving around. It makes focus very hard, yet my vision is 20/20 in acuity.. how do you convince a doctor to help with vision when you have 20/20 acuity (I used to think acuity is all that mattered.)

Brain? -- Maybe it's cause I've bee in living hell from these symptoms for over half a decade just 'toughing it out' -- I don't know anymore. But my memory is not very good anymore, I can't think clearly, I'm depressed, anxious, and well feel miserable.

Enough on the symptoms --

I spent years researching my symptoms reading everything I could get my hands on, books, internet, etc -- and never could find an answer so I just gave up. Doesn't help.

I've seen 3 GP's -- none have helped. Two of them ordered Xrays of my spine, but said.. "Well, they look fine to me.. nothing is wrong." -- Meanwhile I'm thinking.. great, I'm in constant pain, stiffness, and misery and since the Xray looks ok I'm just doomed to suffer? Of course I am rather meek at the doctors, I don't try to tell them how to do their job. ONE doctor gave me 30 Lortabs every 6 months.. and it helps , the only thing that has every helped. But they last like 2 hours and don't even begin to be 'enough' to help 24/7 symptoms. The other doctors gave me ibuprofen, and mobic. Neither helped -- like trying to kill an elephant with a bb gun.

One doctor, when I told them more about my vision (for the fourth time in a row) ordered an MRI of the brain. Results normal. Another doctor for my constant pain said just go to a chiropractor, you should be fine.

I guess because I don't go into the office crying, or showing my pain (I try to hold it in, I have always had a high pain tolerance) they see me and think my complaints are meaningless? I get very hopeless when I leave a doctor after I open up about how bad my symptoms are and they leave me with no help, medication, treatment or ideas. I understand they aren't the ones feeling what I feel -- but who else do I go to?

I am posting here to try and figure out what to do next.

I haven't had an MRI of my spine.. no part of it. I think logically I should get an MRI of the spine due to the chronic pain all over it. Though I 100% expect it to come back completely normal, and I'm once again dumbfounded at having no proof for my symptoms. But, knowing back surgery I also know having a bad MRI result isn't a 'good' thing, but at least I would have some proof where a doctor would treat my symptoms. At this point that is "ok" with me.

Since I have pain from the base of my skull to the bottom of my spine -- what MRI do I get? Can they order a full spine MRI? I certainly don't want to get the wrong section imaged that would not show a problem.. ie: Get my thoracic spine imaged and it shows "normal" and have problems in my cervical spine and/or Lumbar/sacrum. How do I approach that with a doctor? I have insurance, but with a $750 deductible. I have saved a few thousand in anticipation of an MRI.

If I get one ordered, for my symptoms what is better with or without contrast? I see this as a 'one shot' deal/test and if there is a problem I want it to be found.

I have so many symptoms and problems and no 'test' to back any of it up at the moment that it makes me so leary to go to any doctor now. Any advice on how to handle the doctor I do go see? I can't 'live' with these things.. I can't work, can't finish school.. I am in some ways disabled due to this - but I "look" normal.

Can I get pain medication for my chronic pain before they figure out what is causing it? I am no drug seeker,.. and just want some relief.. and to me I don't see why a doctor can't treat my symptoms until he or she can figure out just what the heck is going on with me. Why must I continue suffering until some 'test' can come back positive? Why would I go spend money and lie over and over to the same doctor? (Which is the only thing I can assume some of them would think if they allow me to keep coming back but don't treat me.)

I know I probably sound pathetic, I apologize if so. I'm just in bad shape and have no clue what happened to cause this and need some direction and answers.

I appreciate your time and advice,



  • edited 04/03/2013 - 1:43 PM
    The user and all related content has been deleted.
  • Your symptoms sound like the symptoms of Fibromyalgia. Google that and see if you think it fits you. Fibro is a very real condition that affects many many parts of thebody and there are no clear tests for it. I would see a Rheumatologist that specializes in Fibro.
    DDD 2 level ALIF L3-L5 in 2007. 4/11/13 posterior fusion w/decompression on L5-S1.
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  • LizLiz Posts: 9,709
    i am sure that you will find your time on spine-health very rewarding. this site is a powerful and integrated system that is dynamic and continues to grow.
    here are just some of the highlights:

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    - as a bonus, spine-health provides these patient forums. here is where you can meet thousands of other people who understand and can relate to your situation. you will soon become part of the spiney family who provide comfort and the advantages of a support system. you are now part of this family that is approximately 20,600 international members and growing daily.

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    if you have any questions or need assistance, you can use the private message facility to contact any one of the moderators on my team:
    dilauro , tamtam or liz


    Veritas-Health Forum Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • I am sorry that you appear to be getting the run around from your GPs. It is time for a specialist to get involved or you may have had a run of bad GPs. I agree that first should be an MRI of your complete spine. I am assuming you have been evaluated for MS? If not, a number of things come to mind regarding the weakness including FM (other poster mentioned), MS, GI disorder causing some type of vitamin deficiency, neurologic conditions and spine conditions. I guess I would get the MRI and go to a neurologists, especially with your eye symptoms. Are you at all active or are you bedridden? I have been bedridden for only three weeks but it was enough to make it very difficult for me to walk and certainly seems to be the reason why I am so weak and off balance.
    Age 55
    Herniated L4-5 1992
    DDD diagnosed
    Hysterectomy 2005
    Steven Johnsons Syndrome 2008-09
    Gastroparesis 2009-10
    Right ankle and toe reconstruction 2012
    ACDF C6-7 surgery March 2013
    Stroke? Cancer? MS? Who knows! in inferior cerebellum 2013
  • Thanks for the replies.

    Yeah, I've been a mess for longer than I can remember.. I can't really remember what remotely feeling normal was like.

    I'm literally scared of seeking more medical treatment (not afraid of tests, or pain) but of ignorant or close-minded physicians who are likely to dismiss my complaints due to my age and how I 'look'.. I don't look miserable and I don't act that way.. I am now 34 so am getting older but it feels just like I was when I was 27, same symptoms, same constant pain,.. very little in the way of change.

    I have no other option but to get help, it just scares me as above that I won't be able to find any -- as current experience thus far has netted me with a whole lot of nothing.

    That is 3 GP's, 2 Optometrists and 1 Ophthalmologist -- XRAYS = normal (been a few years since the last). MRI of brain was reported normal in 2010. I have had RF factor negative, Low vitamin D (but I can't take any vitamin D supplement without seriously getting constipated, and the GP did another vitamin D test months later that was of a different type that showed my level in normal range (low normal but in reference) while the first Vit D test showed a level of 14, which was considerably below the low end reference. I've tried different things over the years -- tried tanning beds, sun, etc for 6 months to see if raising the level that way would make a difference.

    I have had various other blood tests -- ANA negative, ESR , BLA-B27 antigen negative, and many regular lab works that show normal general blood work.

    After my last GP visit with the doctor who was ordering the tests every other 4 month visit,.. he ordered an MRI and then before I went to get it told me to go to get a neuropsychiatric evaluation. I had the MRI, and I did not go to the Psychiatric center as this level of physical issue is not solely derived from some psychiatric problem. Nothing bothers me more than when a doctor essentially gives up or seems to make a judgement in his head that all of my problems are generated in my head (even though I act perfectly normal). It is an insult to be frank. I have entertained many anti-depressants just out of desperation.. none helped,.. I even tried Cymbalta as it is FDA approved for pain -- It did nothing but perhaps make me feel a bit worse over time. I have tried Zoloft, Luvox, Lexapro, Cymbalta, and one or two others I can't remember.

    What frustrates me is , as I've mentioned, how and why can/does a doctor see a patient who explains the same symptoms 9 visits in a row over 2 years+ and offer nothing but some antidepressants and mobic. I mean for moderate and severe pain when those things don't work why on earth wouldn't you try other options to help the patients quality of life?

    Further why wouldn't a GP order an MRI of the spine? I got the firm impression that since my XRAYS were normal the GP had no intention of ordering an MRI of my spine. Though he did order one of the brain -- when he did I said sure and asked if it was possible to do some or all of the spine with the Brain MRI -- he said no insurance wouldn't cover it , brain only.

    So ultimately it was the neuropsychiatric referral that turned me off.

    The GP I see now is a woman and is just for routine checkups twice a year -- I don't get into my symptoms with her as I tried to once and could tell she really was clueless (recommending a chiropractor).

    I see mention of an orthopedic doctor, I see mention of a neurologist -- and perhaps another specialty in the mix --

    Which should I see first?

    Bottom line I feel I've got to keep it simple as my symptom list is so huge now it is likely to cause me to lose credibility with most doctors immediately -- either thinking it just isn't possible, or I'm a hypochondriac (which I don't think keeping things to yourself for years on end is indicative of.) - So which symptoms would you focus on and again with what type of doctor?

    How do I go about asking for a Full Spine MRI? I got the impression insurances don't approve such MRI's easily.

    I really want to get whatever imaging will fully rule IN or OUT issues with my spine from C1 to the Sacrum -- so I can move on with other possibilities or have found the issue that should have been discovered years ago.

    I saw someone mention getting a CT scan of the spine and a Full spine MRI -- how would I present this to the doctor to get it done under his recommendation?

    I saw mention of Fibromyalgia -- The GP who ran the tests made a mention of it at one visit briefly -- but pretty much had nothing but the name. I've accumulated an encyclopedic knowledge of medicine over the years and know what most disease including Fibromyalgia is -- but from what I've researched they don't know why it happens, or exactly what is going on,.. and it can't be measured (thus diagnosis is one of exclusion). More importantly,.. how is it treated?

    I've run through the tryciclic antidepressants, SSRI's, SNRI's, "Mobic", Inlcuding Cymbalta,.. A doctor just saying "Well, it may be fibromyalgia..." and then doing nothing really doesn't accomplish anything.

    My goal is to get better -- I have realistic expectations.. perhaps I can't be back to where I should be at this age, but I know I can function better than I do. With this all we have are diet, exercise, and medication. The first two don't require a physician, the latter seems to be limited to drugs that are 'addictive' but effective.

    If I get proper Imaging and it does turn out 'negative' -- then fibromyalgia is a very possible 'catch all' basket diagnosis (I don't doubt it is real) -- but it needs to be treated, and I don't feel M.D.'s would be very aggressive in treating an 'unprovable' disease.

    Hester -- I am not bedridden literally -- I get up, I get out to the store, go out to eat occasionally and do some normal things.. but any working on my car, working in the yard, sitting at a desk in office to do some IT work , etc.. is just extremely painful -- I often stand wherever I go because it feels better on my back.
    As for MS -- I had the MRI for vision issues and I'm sure it would have picked up multiple sclerosis. GI issues,.. hrmm possible I'm sure, but what vitamin deficiency causes my symptoms?

    Sorry so long..

    But I am just posting here to get some real advice basically on :

    1) What *kind* of doctor to see next. I really don't know how to choose anymore as the symptoms fall across several potential specialities.

    2) Am I of lucid mind thinking the absolute first test that needs to be run is a Full Spine MRI? (With this, can a FULL spine MRI be done? Or is it just highly unusual? -- and again contrast vs. no contrast there is no consensus here?)

    3) How would you approach whatever doctor is unanimously recommended for me to see first? IE: Go over all of my symptoms from head to toe? Tell all the drugs I've tried, antidepressants, etc? Or just focus on the pain to start with to keep it 'simple' ?

    I'm sure alot of this seems like I'm way overthinking things, but I've been trying to figure this out with and without doctors for 7+ years,.. and I feel literally trapped in this body and situation with no hope of getting answers/help (hopefully wrongly).

    Appreciate your time, advice, and experience you can offer,
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  • I wonder if you have a spinal fluid leak - maybe a chronic slow one that is putting everything off. That is what they are calling all of host of issues I am having post ADCF surgery. Dizziness, vertigo, pain, weakness, visual disturbances, ringing in the ears, mental confusion are all part of a SFL or CFL. I think an MRI with some type of special contrast might pick it up. I spent the last three days following recommendations to close a leak - lay flat on your back 24/7, drink lots of caffine and fluid as in drink an overload, stay that way for 48 hours and then see if you feel better. If you don't then this idea can be ruled out.
    Age 55
    Herniated L4-5 1992
    DDD diagnosed
    Hysterectomy 2005
    Steven Johnsons Syndrome 2008-09
    Gastroparesis 2009-10
    Right ankle and toe reconstruction 2012
    ACDF C6-7 surgery March 2013
    Stroke? Cancer? MS? Who knows! in inferior cerebellum 2013
  • Hester -- A Cereberal Spinal Fluid leak eh? Over the past 7 years I've researched just about everything and a 'leak' isn't one of them I considered. I have considered CSF conditions -- but generally due to increased pressures in the spine and brain. It would be sort of like a chronic elevated pressure in the brain but not so severe it is causing vomiting and other acute scenarios when the brain is under pressure.

    I've researched a bit (been probably over a year since I researched contrast vs non) regarding a spinal MRI -- and IIRC I didn't really get any clear concise information of what would be a better way to go. It didn't seem like contrast = better.. just different. And my intuition tells me that with contrast perhaps there are things that would possibly be missed that would not be without contrast,.. and vice versa. Anyone familiar with the agent and without -- and given my plethora of symptoms, weakness, pain, and all the other things have any votes and reasoning for contrast. Hester just provided one for contrast.

    Though I have slept for long periods of time in the past several months every now and then for 12-14 hours.. and remained in bed for most of the day. While I don't doubt your advice,.. I'm generally dubious with anything as there are SO many possibilities that honing in on one has low odds. I'll try it though.

    I really wish I had an advocate that could go into the specialist I do choose to see in the next month or two that could help back me up with my explanation(s) to the doctor. Not that I can't and haven't done it alone, but for whatever reason I seem to have little luck of any benefit when I see the doctor myself thus far. I'm almost to the point to where I'm angry about it, and just want to go in and be very blunt about what is going on with me, how serious it is constantly effecting me and establishing a tone to take my situation serious.

    I get the impression that the majority of the time (mostly just because I'm a laid back person by nature) I don't really get the accurate point of just how pervasive, painful, and debilitating my issues are. They aren't wrecking my life, they HAVE done so. I can't enjoy myself because no matter what I do I'm hurting to some degree, feel stiff, and this distracts me from doing my IT work and even distracts from what should be pleasurable things -- (watching movies, going out to eat somewhere, seeing friends, etc.) -- then on top of that I have the one-two punch of this just constant weird vision that makes it hard to keep my focus on anything and have memory/cognitive issues. Which really bother me and distract me -- at times all of this just amounts to anxiety over my condition -- other times it is just getting through another day wondering if it will ever get better.

    In my mind this has to be systemic -- there has to be some primary root cause for the majority of what is wrong with me.. the likelihood that I have 18 different disease issues that just happened to occur in a one-two year time frame is incredibly low. So I think about, well.. could it be my spine? It without a DOUBT feels like my spine is about to snap. When I'm sitting in front of the computer I have a hard time holding my torso up in proper posture, and my neck/head feels like it weighs 50lbs and I end up slumping over a great deal. I have numerous pillows lined up in my chair to push in the middle of my back, and under my buttocks which does help lower the pain of sitting down from say an 8 to a 6 or so.

    You get the picture -- I just want to find a doctor who finally says -- I have some ideas.. and don't worry , we WILL figure this out no matter how long and how many tests and treatments we have to try. A doctor who is willing to do some research on the side to try and piece my puzzle together, but most importantly just willing to believe what I'm describing is 100% the truth and is willing to stick by me while he (or she) works on the differential diagnosis, tests, and medications to 'try' in the mean time. I have that, it will instill much hope and I will feel like I have someone out there who can help me, where I'm just in a position of making through each day right now which is adding up to years of my 'prime' being utterly thrown down the trash.

    Where do you find such a doctor? There aren't any review sites that I've seen that give but a few vague reviews on doctors and certainly don't give me any real indication any better than just opening the phonebook and throwing a dart at the medical section.

    I wish I could just go in -- see the doctor and have him or her get into my body for just 10 minutes.. that is all. No more would need to be said to explain things.

    Oh on the MRI, what kind of *ballpark/estimate* cost am I looking at for a FULL spine MRI ? Both ways:

    1) Out of pocket entirely.

    2) With insurance + out of pocket for co-pay and deductible.

    My deductible is like $750 -- and the copay on the Brain MRI was $300 (when the insurance ended up paying $99)-- I know out of pocket is always much more expensive, but I have 2-3 thousand saved for it -- but I have a feeling that still wouldn't be enough out of pocket, but shouldn't 2-3 thousand dollars be enough to cover the Full MRI with BCBS insurance? Also, I've asked it a few times, but any sage advice on how to phrase that I need a Full Spine MRI ordered by the doctor? I really don't know why it would be an issue for such a long standing problem with my health.. the doctor just signs a paper at most and insurance approves or denies. If the doctor's diagnosis (reason) for ordering the MRI is sufficient enough insurance will be fine with it. So I am a bit at the mercy of the doctor even for the MRI.

    Thanks you all,
  • However, an MRI I have read is best to show a spinal leak. That, and some scary tests that shoot dye up the spinal column. I would not focus on any emotional issues. Doctors WILL just write you off. That fact that your condition seems "chronic" rather than "acute" makes it harder to diagnose. I think the weakness and your eyesight symptoms are most important.
    Age 55
    Herniated L4-5 1992
    DDD diagnosed
    Hysterectomy 2005
    Steven Johnsons Syndrome 2008-09
    Gastroparesis 2009-10
    Right ankle and toe reconstruction 2012
    ACDF C6-7 surgery March 2013
    Stroke? Cancer? MS? Who knows! in inferior cerebellum 2013
  • ZippedIn08ZZippedIn08 Posts: 15
    edited 04/10/2013 - 8:39 AM
    I was able to get a full back MRI, plus one of my brain, just based on leg weakness, so I would ask your dr about ordering one. And I would see about a consult with a neurologist since, once again, just based on weakness and eyesight, they may be better than a regular GP. Do you need a referral? If not, it can't hurt to call one. Actually, it can't hurt to ask for a referral if you do need one. My GP told me I didn't need to see a neuro, but since it didn't effect him either way, he gave me one. Just DON'T GIVE UP! It took me a few years to finally get where I needed to be, then another 6+ to keep it going, so it unfortunately isn't an overnight process.
  • ..whatever is going on with you, Chromatic is clearly beyond the scope of your GP.

    Get thee to some specialists who take your insurance. If you are not getting the response you need - which is to do a FULL panel of everything, then move on to someone who will listen.

    Your best bet is to tell them that you do NOT want to mask the issues with drugs until they find out what is going on and that it's really time to really find out what's going on. That will remove any concerns that they may have that you are trying to seek out drugs.

    One thing that your symptoms ring a bell to me about is LYME Disease. It is an often very over-looked disease and in its early stages can be remedied by antibiotics. I don't know where you live, but Lyme Disease is rampant in many areas of the U.S. and Europe.

    My sister who has lived in the UK for a few decades was FINALLY diagnosed with Lyme after 7 years of misery and misdiagnoses. The UK doctors didn't believe they had Lyme in the UK and though it was all in her head.

    Many of the Lyme Disease symptoms mimic other diseases with the symptoms you are mentioning.
    Do you remember getting a tick bite? Do you remember getting a tick bite that turned into a red bull's eye? (That is not always the sign of Lyme, but if you do, it is a good one.)

    While blood tests are not always reliable for Lyme, it might be worth asking about.

    I wish you well. There IS someone out there who will listen.
    10/26/2012 ACDF C3/4 C4/5 surgery
    No pain; no pain meds - thank goodness!
    04/01/2013 - 5 months + 1 week - FUSED
    Doing some physical therapy for even better range of motion
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