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    Where do I go from here?
    crosslin44 posted:
    I'm lost, confused, and tired of fighting for a diagnosis. I KNOW I need to see a Neuro, but the one I keep being referred to denies me every time.

    Here's what I've been going through since I was 18.

    1993-1994- pregnant. Right leg began giving out when walking. No pain.

    1994-1995- pregnant.

    1996- began having upper back pain. Given darvocet and soma, then trigger point injections. TPI helped some.

    1999- present- began taking ibuprofen daily on Dr advice for neck and upper back pain.

    2000- present- daily headaches, were worse with menstruations.

    2000- still occasional
    - pain and loss of strength in hands and arms. Couldn't use pincer grip to pick up paper sheet.

    - low back/sciatic pain

    - right leg "giving out" still.

    Oct 2002- July 2003- pregnancy- late pregnancy leg edema, no pre eclampsia. Hands in pains and loss of hand strength again.

    Feb 2005- Oct 2005- pregnancy- constantly ill, preterm labor beginning 19 weeks due to chronic uti, preterm birth @ 34 weeks, too much amniotic fluid, gestational diabetes.

    2007- "blacked out" at work...still did job well but didn't remember any of it. Went to shrink who said I was depressed...
    (I will now have conversations and not remember having them at all)

    2008- began getting a migraine, but never with a headache. Still have them. Sometimes 3-5 a day.

    2009- both legs began swelling from just above the knees to my toes.

    Early 2010- now
    low back pain severe, unable to walk(resolved, flares up occasionally but nothing like it was), both lower legs pitting edema, severe headaches, neck pain radiating into both arms, major fatigue, sleep disrupted by pain. Hands, arms, legs, feet become numb, tingle, painful. Vomiting from pain. Skin feels sunburnt but no burn or injury to the painful area.

    2010- went to chiro at hubby's insistence. Chiro wanted me to see a Neuro, suggested I had MS based on symptoms.

    2010, just after seeing chiro- found a GP Dr. Told him everything, suggested Rheumatoid Arthritis.

    Tested for rheumatic disorders, lupus, diabetes, thyroid issues all negative.

    Told I had bipolar disorder. ( more on that later)

    Meds given- baclofen, tramedol, 800mg ibuprofen, lithium(taken off quickly), depakote.

    2011- finally MRI's!!!!!

    C spine- osteoarthritis, osteophytes
    T spine- osteoarthritis, osteophytes
    Lumbar- normal
    Brain- benign empty sella, mildly prominent cerebellopontaine angle cistern.

    Nothing ever said about empty sella or cerebellopontaine angle thing. No clue what these are

    Told C and T spine were so arthritic that I had the spine of a 70 year old.

    Nothing done. Requested Neuro consult, never was seen by a Neuro. Multiple times.

    2013 complete Bell's palsy right side. Still doesn't work right. Still burning pain and numbness occasionally

    Nov-Dec 2013- pain in body tremendous. Not sleeping. High anxiety not knowing how I'd feel each day/night. Went 4 days with almost zero sleep. Put in psych hold because all anyone saw was the old bipolar diagnosis. Pain ignored. The minute my period stated, I fell asleep almost 24 hours. Found new Dr.

    Jan 2014- new Dr sent me to gyn.

    2014- hysterectomy- 7cm fibroid, adenomyosis. Kept ovaries. Menopause anyway. But OMG every mental issue is ever had was gone. Gyn said it was all hormonal and misdiagnosis happens in these cases more than I'd thought. WOOHOO I'M NOT MENTAL!!!!!

    Some of the low back and leg symptoms lessened. The fibroid had been in the back side of my uterus and pressing on a lot!

    2014- headaches bad again. (Still cannot look up at anything without getting headache and nausea)Went to different chiro. During exam found right leg/foot loss of sensation in nerves accosted with L5-S1, S1-S2.

    2015- now
    -heart palpitations, consistent for 2 weeks now (today is Feb 16)

    -random blood pressure, sometimes way high, sometimes really low.

    -hands, face, leg, low back swelling.

    -Gallbladder symptoms, no stones or infection

    -Severe headaches

    -Fullness in right ear/muffled hearing, no infection, etc

    -Right eye vision blurry(like in light fog)




    -Multiple muscle weakness

    -Dropping things because hands stop working

    -Stumbling and falling over nothing... Even when just standing still

    -Urination... Gotta go now! and sit for 15+ minutes to get it all out

    -shortness of breath... Feeling like I am in a bear hug.

    -bm... All over the Spectrum

    -forgetting words, ideas, where I was in conversation...

    - dry mouth

    - dry eyes

    - hip joint pain both sides

    - can not concentrate

    - zoning out

    - can't always understand what is being said to me... Not from lack of hearing, just not understanding.

    - Charley horses in back thighs

    - knots in upper back

    - scalp goes numb

    - big muscle on right side of neck, under the ear, seizes up during laugh or yawning. Very painful

    - tongue goes numb just before tip of tongue.

    - looking at a stack of dinner plates, the plates look like they are jiggling. (No other way to describe it)

    -eyes will wiggle side to side really fast.
    Stephanie Butler, RN responded:
    Hello Crosslin44,

    It sounds like you have been through a lot! I'm so sorry that you have had issues getting healthcare providers to take you seriously, that is extremely frustrating. You are on the right track, you should definitely get an appointment with a neurologist. If they one you were referred to isn't taking new patients, try a different practice.

    It's extremely helpful that you already have a list with all of your symptoms and when the first occurred. I would also gather your entire medical history, as well as family history and any medications you take. Having a good neurologist do a good exam and run some additional tests is the next step in finding the answers you need.

    I wish you the best of luck, and please keep us updated!


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