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Thread: So confused...MRI says one thing...Neurologist says other

  1. #1
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    So confused...MRI says one thing...Neurologist says other

    I have been dealing with symptoms that are becoming increasingly frustrating to deal with and Neuro says MRI isnt conclusive for symptoms!! <grrrrrrrrrr>



    Symptoms
    -Left hand numbness accompanied with popping noise
    -Left arm pain from elbow down and up (sharp horrible pain that wakes me up)
    -Numbness in legs
    -Pain and trouble walking even after sitting for a few moments
    -Sometimes large joints feel really loose
    -Constant red rash on my face
    -Intollerance to heat (vomitting, diharrea, weakness, shaking from within)
    -Sudden involuntary movements of my fingers, face, and body
    -Pain across shoulders
    -Able to move something in my upper spine region (feels like a small fatty something)
    -Hard dime size mass over my left kidney
    -Lack of reflexes
    -Sometimes I experience night time bedwetting
    -Memory loss to some sligt exstent (my hubby is the one that notices it)


    MRI Findings
    - Slight Disk Herniation at C4 and C5 (recent MRI)
    - Benign Hemangioma of T1 or some sort of benign tumor (recent MRI)
    - Spina Bifida Occulta (MRI 2+ years ago)
    - Extra 6th lumbar vertebra (MRI 2+ years ago)
    - Scoliosis

    **I have never had a thoracic MRI and wondering if that would shed some light**

    My neurologist has been thinking MS but a brain MRI came back clean, he just ran a bunch of blood work and a Spinal Tap at the end of last week. I am desperate to find out some answers.

    Questions I have:

    1. Doctor says that the hemangioma cant cause problems- I have done some research online and it seems to be like many others have problems just like what I am experiencing

    2. Same doctor also says that the herniations are enough to cause problems

    3. My ANA blood work came back normal. Is it possible to have Tumid Lupus, I have the exact rash on my face etc and many of the symptoms.

    4. Could I have a tethered cord due to the spinal abnormalities that they just havent realized??

    5. I had a horrible dystonic reaction to reglan while pregnant with my son and only had problems after that could it be related??


    I am desperate to live my life again. I played college womens golf, and was healthy until all of this. I have an adorable 2 year old son that I want be out chasing again!!
    Last edited by Allyjaysmom; 10-05-2009 at 10:12 PM. Reason: forgot to add something

  2. #2
    I know the feeling - but it seems that the neuroogist usually (in my experience) sees things a lot different on the MRI's than we do. Please hang in there & good luck!

  3. #3
    AllyjaysMom,

    I know you have probably heard this before but please be glad that you don't have multiple sclerosis or lupus erythematosus. At the present, there is only medication to help slow down the progression of MS and no effective treatment to reverse the losses, including the neuropathic pain. Likewise, lupus is a terrible disease. While you may think that it would be good to get a diagnosis, these are diagnoses that you should be glad that you did not get.

    MRI typically do not show changes in the central nervous system for symptoms such as pain. You give a list of symptoms but most of these are unlikely to be related to a central nervous system problem. My impromptu comments are in red.

    -Left hand numbness accompanied with popping noise
    -Left arm pain from elbow down and up (sharp horrible pain that wakes me up) The fact that it is from the elbow down indicates that it is very likely to be due to a peripheral nerve problem, probably compression of your ulnar nerve at the elbow.
    -Numbness in legs This can be from many causes. If it is in both legs, this is not likely to be due to a spinal root compression. Many roots will have to be compressed on both sides of the spine in order to get numbness in both legs. However, it may be due to a peripheral neuropathy, which would not show up on MRI. A test of your peripheral nerve may be able to tell you. Diabetes, for example, can cause this type of neuropathy.
    -Pain and trouble walking even after sitting for a few moments This sounds more like an orthopedic problem or a vascular problem than a neurological one.
    -Sometimes large joints feel really loose This is definitely an orthopedic problem.
    -Constant red rash on my face Perhaps this is from medication? Depending on its location and distribution, it might be related to some autoimmune problem, such as lupus erthematosus. However, the absence of elevated ANA would argue against this possibility.
    -Intollerance to heat (vomitting, diharrea, weakness, shaking from within) These symptoms suggests a possible hormonal problem, such a hyperthyroidism and it may explain some of the other symptoms that you have.
    -Sudden involuntary movements of my fingers, face, and body Spasms are likely to be due to the central nervous system but there is really no effective therapies nor necessarily a single cause.
    -Pain across shoulders This may be related to the C4/5 disk herniation. One approach may be to do an injection of lidocaine/steroid into the area to see if it relieves the pain.
    -Able to move something in my upper spine region (feels like a small fatty something) This sounds like a lipoma. You should leave it alone.
    -Hard dime size mass over my left kidney What does the MRI or CT scan suggest that this is?
    -Lack of reflexes This is more consistent with a periphearl neuropathy than with a spinal cord problem.
    -Sometimes I experience night time bedwetting This may be due to many causes but the most likely reason is loss of a bladder problem.
    -Memory loss to some sligt exstent (my hubby is the one that notices it). What medication are you taking? For example, valium and other tranquilizers cause memory loss.
    In answer to your specific questions, I don't think that your symptoms are likely to be due to a spinal cord problem. I think you need investigation into the possibility of a peripheral neuropathy with an electromyelogram, blood tests to rule out diabetes, hypothyroidism, and other endocrinological problems, and somebody to review your existing MRI or x-rays to find out what the "mass" over your left kidney is and the fatty mass in your lower spine. If it is really bothering you, but it doesn't sound like it, your joint looseness should be assessed with x-rays of your hips and knee joints. If a peripheral neuropathy is present, it would be good to carry out a detailed endocrinological investigation to see if there is hormonal deficiency that could be corrected. Of course, if any endocrinological problem is found, it should be treated. For example, diabetes should be treated.

    I hope that this is helpful.

    Wise

  4. #4
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    Did they test your spinal fluid for Lyme's disease? I don't know muxh about it, but remember it was a differential diagnosis for a collection of odd things, and is known I think to have both neurological and orthopedic/inflammation effects. I dontrecommend pursuing an MS diagnosis bcause, in addition to Wise's exhaustive wisdom on the subjeeeeeeect, there really is no help for itttt xceptt maybe 4-ap, and in my experience no doctor ever will diagnose or treat you for anything else ever again. I suffered trauma that sent me to the hospital, lost hand function within minutes or sooner, and still had to get to a second ER docttor to see beyond the otherwise useless MS diagnosis to a mechanical spinal injury.

    Though if it really is MS, you want to get on one of the drugssss qickly.

    Therewere other diffrential infectious things to testcfor. All I rember os Ricketts, but differential diagnoes for that shoul tell you the others.

    I also would reccommend epidurals for diagnotic relief, or peripheral branch blocks. RF FREQUENCY DORSAAAAAAL root ablation gave me relief for months.

    Good luck Have you tried swimming?
    Last edited by Random; 10-08-2009 at 12:43 AM.

  5. #5
    have you asked about cervical spinal stenosis? its a slow disease of the spina bones painful and long term
    http://www.nlm.nih.gov/medlineplus/spinalstenosis.html
    ask your doctor just a thought ;-)

  6. #6
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    I totally agreeeeee with checking out stenosis. Mine was a controversial diagnosis based on the small siz of my canal rather than seeing impingement on my already atrophied cord, but I improved a lot after m laminectomy until I had neck trauma.

  7. #7
    O man I remember my long wait for results.
    I hope the best for you. I have M.S. problems were here and there, now slowly getting worse after over 10 years of knowing. It isn't end of world. Just have to live it different and take a good eye on things you do and eat healthy. It goes a long way.
    I was really bad and fought my way back, it is only from other problems/injuries that I am being dragged down now.
    Keep a positive attitude in your mind. The mind is your strongest weapon.
    I know I will get a lot of crap for this post but I have a trophy case from after I found out.
    I couldn't walk, talk or use my right hand. I fought my way back and became a competitive Bodybuilder. Doc tore up by parking pass and sead they would have to do a spinal tap again just to proove I had it.

    Again I hope test come back negative.

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