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Need advice - don't know what to do.



  • ..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
  • All that is required I think is a simple blood test. Keep us posted.
    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
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  • mentioned is called a myelogram. It is usually done after an MRI when the source of your symptoms are still not conclusive.
    I had one in 2008, not fun, but it lead to a laminectomy which stopped the loss of strength in my left arm.
    laminectomy c4/c5 2008, ACDF c4-c7 Jan 20 2014 sched
  • HesterHHester Posts: 90
    edited 04/11/2013 - 9:26 AM
    I suppose the odd position of my neck with this brace or even the actual damage from the disc could have dislocated the "crystals" in my ears causing the vertigo. Hopefully someone can get to the bottom of it as it will be impossible to even drive let alone go back to work.
    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
  • Hi Hester,

    I want to thank you because I have been having a lot of issues that are mimicking Chromatic's. You mentioned a possible "spinal fluid leak", and that makes sense. Since last June, I have been having issues that feel like vertigo and it's usually brought on when I need to get up quickly. Other symptoms are trouble using fingers, headaches, weak muscles (trouble holding things up like a telephone, reading a book), hearing is worsening and ringing in the ears at times.

    I had giving up trying to figure it out. I have been on anti-depressants for years and have already had 6 levels fused over my 5 surgeries. I am having a contrast MRI on the 30th and a nerve conduction study next week. It feels very similar now that I think about it to what happens if someone gets up quickly after having a myelogram.

    I never gave a spinal fluid leak a thought. Not saying that's what it is, but it makes a lot of sense.

    I hope all of you are feeling better and feeling relief.

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  • Chromatic,
    You need to see either a board certified spinal ortho or neurosurgeon. Your other option is a physiatrist who specializes in spine issues or physical medicine and rehab......as far as us telling you whether to get an MRI or Ct scan with or without contrast, that's NOT our call to make. Most of the first ones done do not have contrast used just so you know. That does not mean that they will miss whatever might be the cause of your pain assuming it is related to your spine somehow.
    Contrast is used to see how severe nerve root compression is or if a disc bulge is in contact with the thecal sac and if so, how much or to see if there is compression damage in the spinal cord itself......there is no reason that they need to use contrast unless they find something on the original scans and then they will send you back if they need more studies.
    As for why your GP didn't respond to your complaints of pain in what you felt was an appropriate manner- well, that is because you are asking them to treat a condition or one that you suspect you may have when that is not within the scope of their care. The previous doctors did the right thing, they sent you for xrays and then when nothing turned up did blood work etc to rule in or out other conditions that may have been responsible for the pain levels and even tried you on various meds to help with the pain.....that is all that they should have done other than to maybe suggest that you consult with a neuro or ortho, but then again, with no findings on the xrays, it is not all that surprising that they didn't suggest a follow up with one or the other.
    GPs are great at general health problems, but like when you need surgery, you see a surgeon, when you need a neurologist, you see a neuro, or an endocrinologist when you need to see one for an endocrine problem. Choose the right doctor for the right condition........
  • Kiki48KKiki48 Posts: 196
    edited 05/27/2013 - 2:55 AM
    I see that your latest post was over a month ago. You did an excellent job on explaining yourself and symptoms. I admire that because I have many myself. I do hope you are checking in and looking at the responses you have recieved. Especially mine :-) l Couldn't resist a little humor here. lol. I want to comment on many things you brought up however I will comment on something that a poster brought up.

    Lyme Disease. If you are interested in getting tested the best bet to find out if you have it is to got to a LLMD. Lyme Literate Medical Doctor. They specialize in diagnosing and treating. If you live in the US a regular MD will most likely use a basic blood test which is over 50 percent false negative. To be truly blood tested to get the accurate results a good lab looks at many factors in the blood. Even than there is chance of a false negative. From the research I did in the past.....spinal fluid test is the most accurate. Besides Lyme disease there is so much more I can say considering your symptoms. Also I know a good amount about Lyme Disease. Especially Chronic. If you would like PM me and we can chat.

  • Jimblab9JJimblab9 Posts: 17
    edited 06/07/2013 - 10:14 PM
    Chromatic, Sounds like you have made multiple trips through the ringer, so to speak. So much good advice has already been offered here that I don't have much to add. Proper diagnosis can sometimes hinge on a hunch or minute detail that can easily be missed by even top notch docs. The neurologist I saw just prior to my lumbar fusion was utterly convinced the locus of my problem was cervical. The radiologist doing the myelogram seemed to almost intuitively pay special attention to my lumbar spine and found a very serious instability that was apparently only evident with my back bent a certain way. This was after CT's and MRI's had failed to pinpoint the problem.

    If your GP cannot or will not work with you to find the right specialist for your condition, you might consider changing docs until you find one who will. Not to play doctor, but have you looked into a condition known as "pseudo tumor" ? It's related to elevated pressure in the cerebrospinal fluid that can cause a myriad of symptoms. At any rate, be persistent in finding the right diagnosis. A good doctor is one who never gives up in working with you to alleviate your suffering.
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