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    Old 06-22-2014, 01:36 PM   #1
    Ginger8888
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    Hi, it's me again...

    The results results of my C-spine MRI came back. I had no lesions, only a few bulging discs. I also had the neuropathy test (in my legs) (this is one seriously un-fun test) and the results were normal.

    So at this point I am pretty stuck. I have a long list of symptoms (some debilitating, others a nuisance), a 10+ year history, and no end in sight. I am only 25, I have been unable to finish school and have no job (*shameful). After continuous reading and eliminations, only MS or Lupus explain all of my symptoms. At this point I am pretty convinced it's not MS, but I guess Lupus can't be ruled out since ANA test are unreliable. There are a few others that fit a decent portion of my symptoms (Wilson's disease, Bechet's, Hyperhomocysteinemia, Takayasu's arteritis, Neurosarcoidosis) but it's difficult to see them as viable explanations.

    So I am making a desperate plea for any other possible explanations. (I have even considered emailing doctors that might be able to help, but haven't found any yet). For anyone out there reading this here is my history in an easy to read list format:

    Symptoms:
    -Joint pain/stiffness/constant cracking-10+ years (every joint; not usually symmetrically occurring)(worst in: hands, knees, spine)
    -Migraines-10+ years (duration= 3 days, 5+ times per month)
    -Mouth ulcers (painful)
    -frequent swollen glands
    -Paresthesia / numbness / tingling / painful burning tingling - 6+ years *not typically symmetrical* (numb ring around a toe, one side of face, from shoulder to fingertips, leg, adjacent fingers or toes, hip and butt area, foot, head, back, and All Limbs Upon Waking Up!)
    -Drugged feeling upon waking up (must wait to regain partial feeling in limbs, then stumble around holding onto walls because it feels like my muscles have been replaced by sand).
    -Face (+breath from chest up through to mouth and nose) feeling hot & feverish with no fever, and not hot to others - 7+ years
    -Gluten Intolerance (leads to bloating)- 7 years - (now bloating from ingesting anything)
    -Bladder issues- 7 years (have to go constantly, but no infection)
    -Dizziness & blackness upon standing up (have to hold onto something or sit back down)
    -Involuntary movements (hand suddenly releases while carrying something, right leg always moves inward while sitting & right foot jerks upwards)
    -Swallowing Difficulty / tongue stiffness / throat tightness (makes talking unpleasant) 6 years
    -Clumsiness (drop/knock over/ run into 20+ things per day)
    -Extremely poor memory and concentration
    -Muscle Spasms (thigh muscle will contract then the legs will shake violently, then stop for a minute, then repeat for an hour+)
    -Small spasms in muscles and now in right temple - 2 months
    -Extreme fatigue (no matter the amount of sleep)
    -Heat intolerance
    -Scalp tenderness/pain
    -Outer ear pain 4 years
    -Chronic swollen Taste buds 1 year
    -Jaw pain/fatigue - 2 months (can't get through meals even with soft foods like pasta)
    -Rare reactions and long recovery times to minor surgeries
    -High intolerance to many medications (yet I'm only 92lbs and have a low tolerance for alcohol)(I won't even accept pain meds now because not even Vicodin has ever had any affect on me).



    Things Already Ruled Out:
    -B12 deficiency
    -Vit D deficiency
    -Fibromyalgia
    -Thyroid (normal on bloodwork and MRI)
    -Lyme (tentatively; I've been on a Tetracycline for several years for Rosacea with no change / never any rash / always been paranoid about ticks (and other bugs) so likely would have noticed one on me)
    -Stress/ anxiety / depression
    -*Basically all of the usual's are out (there's more but I can't think right now)


    Tests: (the ones I can remember)
    -B12
    -Thyroid
    -vit D
    -all other standard blood tests
    -Sjogren's AB, anti-SS-A/-SS-B
    -CCP antibodies
    -RA Factor
    -ANA
    -Creatine Kinase, total serum
    -Brain MRIs (twice) - 1 small lesion, dilated virchow-robin spaces, enlarged subarachnoid spaces
    -C-spine MRI - 2 bulging discs
    -Neuropathy test (legs)


    If anyone has any ideas; a doctor who might take the time to consider all the symptoms, or a disease that might fit, I'd appreciate it. (I'll be posting this on several different sights)

     
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    Old 06-22-2014, 02:07 PM   #2
    MSJayhawk
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    Re: Hi Square-One, it's me again...

    Ginger,

    Absent any lesions, you are really in a sticky wicket, but there should be a definitive answer.

    The bulging discs can be a "mechanical" issue which in turn affects your nerves as it can place pressure upon your nerve fibers and cause MS like symptoms. A neurologist or even a neurosurgeon might be able to determine if your c-spine in a certain position is causing any problems for you. Keep in mind that any surgery involving your back would eventually require additional surgeries, but there might be other remedies to try before any surgery.

    You are still not alone. I hope that you continue to make progress towards an answer.
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    Old 06-22-2014, 02:14 PM   #3
    MSJayhawk
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    Re: Hi Square-One, it's me again...

    Ginger,


    I realize that your MRIs have shown 1 lesion, but as the Revised McDonald Criteria requires 2 lesions, you are "stuck" as far as a diagnosis of MS.
    __________________
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    Eternally blessed and eternally optimistic!<><

     
    Old 06-23-2014, 09:57 AM   #4
    Ginger8888
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    Re: Hi Square-One, it's me again...

    Thanks MSJayhawk,

    The disc are only moderately bulging (I'm not sure if that makes a difference). I would hope that if my neuro thought they could be causing symptoms (aside from neck/back pain) that he would have mentioned it when we last spoke, but then again maybe not. But I wouldn't consider surgery unless it was absolutely necessary (due to how badly my body has reacted to past surgeries (toes have never healed from ingrown surgery 7 years ago)), so hopefully it won't ever come to that.

    As far as the single lesion goes; I would think if it were MS that after all this time there would be more evidence of it. So unless that small brain lesion could account for my symptoms from the neck up (as the Thoracic and Lumbar spine wouldn't affect regions above themselves), I'm comfortable saying this isn't MS.

    This forum should really have a section for undiagnosed systemic symptoms.

     
    Old 06-23-2014, 12:16 PM   #5
    MSJayhawk
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    Re: Hi Square-One, it's me again...

    Ginger,

    With the one lesion, you will have to watch symptoms down the road in case a new lesion develops.

    You might ask the neurosurgeon or an orthopedic surgeon as they might be in a better position to provide advice as to a moderately bulging disc. What might be described as moderate to one person may mean something different to the specialist.

    There are other boards for back, neurology (general), and neuropathy..... You can also use the search bar on the upper right side of this page which might help you to search through the many other threads throughout this site.
    __________________
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    MS onset circa 1977
    Proud to be MED FREE!
    Eternally blessed and eternally optimistic!<><

     
    Old 06-23-2014, 01:23 PM   #6
    ladybud
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    Re: Hi, it's me again...

    My thoughts (for what they are worth) is that you have a great many symptoms suggestive of lupus or possibly mixed connective tissue disease, which is lupus plus 1 or more other autoimmune disorders. Do you have any previous results on ANA, like how high titer was and what pattern? How about sed rate, CRP (inflammation), anti-Scl-70 (scleroderma), anti dsDNA, anti-Smith antibodies (lupus) and anti-RNP (mixed connective tissue disease). Those tests would all be helpful and perhaps not all have been done. You can have intermittent + ANAs in lupus, and even 1-2 + in past are meaningful. The swallowing difficulties and throat tightness can occur in scleroderma, and a barium swallow or upper scope may be helpful to rule that out.

     
    Old 06-24-2014, 01:03 AM   #7
    Ginger8888
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    Re: Hi, it's me again...

    Quote:
    Originally Posted by ladybud View Post
    My thoughts (for what they are worth) is that you have a great many symptoms suggestive of lupus or possibly mixed connective tissue disease, which is lupus plus 1 or more other autoimmune disorders. Do you have any previous results on ANA, like how high titer was and what pattern? How about sed rate, CRP (inflammation), anti-Scl-70 (scleroderma), anti dsDNA, anti-Smith antibodies (lupus) and anti-RNP (mixed connective tissue disease). Those tests would all be helpful and perhaps not all have been done. You can have intermittent + ANAs in lupus, and even 1-2 + in past are meaningful. The swallowing difficulties and throat tightness can occur in scleroderma, and a barium swallow or upper scope may be helpful to rule that out.
    Here were the results from the test the Rheumatologist ran in April (in the midst of my flare):

    Sjogren's Anti-SS-A: <0.2
    Sjogren's Anti-SS-B: <0.2

    CCP Antibodies IgG/IgA: 12

    Rheumatoid Arthritis Factor
    RA Latex Turbid: 6.2

    Antinuclear Antibodies, IFA: Negative

    Creatine Kinase: 45

    SED Rate: 3



    Unfortunately the other tests you listed don't appear to have been performed and the Antinuclear Antibodies test doesn't list any numbers, just that it's negative.

    At your suggestion I just revisited Scleroderma and one of the symptoms it covers is bloating, particularly bloating after meals, which has been a major issue for me. Several times I'd thought I'd found the solution, only to have it return with a vengeance.

     
    Old 06-24-2014, 03:34 AM   #8
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    Re: Hi, it's me again...

    Perhaps you could get those additional tests done next time you have a flare. If you have gluten intolerance you may also have diary intolerance. I would cut out all dairy products for a month and see if that helps the bloating. Does your skin feel tight anywhere, like your face or your hands? That is one of the major signs of scleroderma, as well as Raynaud's, a blue/purple discoloration of fingers at times, particularly when cold. As far as ANA, there will only be a titer, like a ratio, when it is positive.

     
    Old 06-24-2014, 12:52 PM   #9
    Ginger8888
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    Re: Hi, it's me again...

    Quote:
    Originally Posted by ladybud View Post
    Perhaps you could get those additional tests done next time you have a flare. If you have gluten intolerance you may also have diary intolerance. I would cut out all dairy products for a month and see if that helps the bloating. Does your skin feel tight anywhere, like your face or your hands? That is one of the major signs of scleroderma, as well as Raynaud's, a blue/purple discoloration of fingers at times, particularly when cold. As far as ANA, there will only be a titer, like a ratio, when it is positive.

    Thanks Ladybud,

    I have tried cutting out dairy in the past (a few different times) but saw no changes. Lately my stomach issues seem to be from swallowing absolutely anything, even water.

    I have extremely dry skin, so I guess from that it feels a bit taut, but nothing like the pictures of Scleroderma that you see on google, and no shininess.

    I don't think I have Raynaud's, however my fingers and toes are almost always cold (when they aren't, they'll be burning up) but they don't turn blue like with Raynaud's.

     
    Old 06-24-2014, 01:42 PM   #10
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    Re: Hi, it's me again...

    With such severe GI issues, I would get into see a GI Dr. ASAP. Not even being able to swallow water is serious, and the cause needs to be determined. Give him the whole picture of all your symptoms, not just the GI ones.

     
    Old 06-25-2014, 12:31 PM   #11
    Ginger8888
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    Re: Hi, it's me again...

    Quote:
    Originally Posted by ladybud View Post
    With such severe GI issues, I would get into see a GI Dr. ASAP. Not even being able to swallow water is serious, and the cause needs to be determined. Give him the whole picture of all your symptoms, not just the GI ones.
    A Gastroenterologist is next on my list, as soon as we've recovered from my other medical bills I'll be able to make an appointment. Luckily my stomach hasn't been as bad as it was a few months ago.

     
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