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    Old 11-21-2011, 11:01 AM   #1
    NotKnowingSucks's Avatar
    Join Date: Nov 2011
    Location: Los Angeles
    Posts: 9
    NotKnowingSucks HB User
    I really Need Help Here - Comprehensive List of Symptoms

    What is wrong with me is my question?
    I am a 36 year old Male

    When symptoms first started I was 31 years old I am now 36 and the symptoms have come back on me recently. Here are my symptoms from onset to how I am feeling today:

    2005 Onset

    November 14th
    - Got sick, seemed like an infection of some kind. Was sick for over a week and got worse so went to doc.
    - Doc gave me antibiotics (amoxicillian) a refill or my inhaler because i have had sports induced asthma my whole life and he did want it to get bad for me

    December 2nd
    - Went on thanksgiving vacation to Hawaii and got worse the entire time I was there so when i got back i went to the doctor again
    - doctor prescribed me a stronger antibiotic (some sulfate drug) and some prednisone and told me to take it only if i needed it

    December 14th - December 22nd
    - Was getting way worse so I decided to start taking prednisone (could hardly breath anymore)
    - Chest opened up and seemed like I was getting a lot of the mucus out of my chest yet i still felt sick like the antibiotics just weren't working still
    - Chest got a lot better but head still felt full, I still felt sick and felt again like I need strong antibiotics but I am no doctor so I stayed the course

    December 23rd
    - I still felt sick although my chest felt better, started packing for my trip to the East coast with my girlfriends family
    - I was so looking forward to this trip yet felt very head sick still (all stuffed up)

    On an airplane from LA to NYC
    December 24th
    - left ear started radiating heat
    - left face started to radiate heat (felt like my head was cut in half and only - - the left side was very hot, like a bad sun burn)
    - left neck and shoulder started to burn also
    - Had some major dizziness all of a sudden
    - Got off the airplane feeling dizzy and not with it, still having the burning and - left sided awkwardness

    December 25th
    - Went to the ER doctor performed CT scan on me and showed completely normal
    - Visual horizontal nystagmus reported I was prescribed vertigo pills and sent on my way
    - Felt even worse, dizzy, out of sorts, malaise but continued on with my day

    December 27th
    - Had some sort of attack, woke up soaked in sweat with bile taste in my mouth (Girlfriend told me it looked like a seizure) All my muscles were tight
    - Major weakness on my left side, neck, shoulder
    - Went to another hospital got an MRI with contrast done
    - Neurologist stated I had torn my vertibral artery in my neck and that I could have stroked out and they rushed me to columbia presepeterian hospital stroke ward to help me
    - Major fatigue

    December 28th - Columbia Prespeterian Hospital
    - Blood Thinners given (coumadin)
    - They performed heart doplers
    - neck doplers
    - spinal tap
    - MRI with contrast
    - Xrays chest
    - They found nothing that could have explained the issues I had, they did not agree with the vertebral artery tare but they had no idea what was causing the issues

    January 1st 2006 (Back in Los Angeles, couldn't sit up straight on entire flight or I would very quickly get sick to my stomach)
    - Couldn't sit up straight without getting sick to my stomach within 60 seconds
    - doctor found out that the spinal tap they did to me did not close up correctly and I was leaking spinal fluid
    - Doctor did blood patch on my spine which closed off the fluid coming out of my back
    - I felt better but still had major issues going on from before

    January - March 2006
    - Nerve pain and burning down the left side of my neck, shoulder and arm
    - Night sweats
    - irregular heartbeat (seen on two different EKG's at the same hospital)
    - heartbeat slowed way down at night to a point where is kept me up, hard pounding
    - vertigo
    - soar left ribs
    - Stiff back, major pain down my spine
    - Spine started cracking on every vertibre ar at least it felt like it
    - Twitching all over my body (no place was spared, everything twitched)
    - Major fatigue
    - Could barely make it through a day of work with lots of pain meds

    March - June 2006 (during this time I began treatment for Lyme Disease seeing I am from East Lyme CT and no other doctor could help me, I tested positive for a Lyme co-infection called HGE titer was 1:160 which was highly positive or so the doctor said)
    - left side weakness in neck
    - Left side weakness in swallowing
    - left side jaw weakness
    - Left side weakness in body
    - Left Arm, shoulder, leg (not clinical weakness though)
    - Went to dentist for root canal thinking maybe an infected tooth was causing some sort of infection wreaking havoc throughout my body (doctor said tooth was very infected
    - Cracking in right jaw joint (first time my jaw ever cracked in my life) this continues to this day
    - During this time I also was seeing a neurologist, infectious disease doctor and an endocrinologist at kaiser permanente who tested me for everything under the sun (had MRI with contrast of head and neck, 2 EMG's, 2 NCV's, every blood tests available, 3 neurological clinical exams, barium swallow test all came out normal or within normal range) they made a joke that I am the million dollar man, all these tests and nothing was wrong with me although i was very sick at the time so it wasn't funny to me
    - Was in and out of hospital with symptoms 10 times during this time period looking for answers and never getting them

    July - Oct 2006
    - According to my notes I came to feel better in October with many of my - - - symptoms starting to go away
    - Left side weakness went away on my body
    - I had tongue and swallowing issues still but not as bad
    - I felt 80% back to my old self
    - I could surf again, play soccer again
    - Way more energetic and grateful thinking the Lyme treatment was working
    - Jaw still cracked everyday

    April 2007
    - Symptoms came back
    - left shoulder weakness
    - left swallowing problems
    - jaw weakness
    - energy level decreased
    - started to see floaters in my eyes
    - Went to see ALS specialist at USC who saw me and after a brief neurological exam stated I definitely didn't have this disease, although I was scared cause my grandmother died of it and my symptoms were bad

    January 2008 - Septemeber 2011 (stopped heavy Lyme treatment)
    - Symptoms in remission or ignored
    - Didn't really have any issues with weak left side anymore
    - jaw weakness went away
    - swallowing wasn't a major problem (although still a problem just not as bad as in the past)
    - Left arm, shoulder, leg weakness went away
    - Recurrent infections occurred every 3-4 months (sinus, chest) took antibiotics and they went away
    - still had floaters and the floaters seemed to get worse over night
    - TMJ or right side jaw cracking remained cracking 7 - 10 times per day
    - everyone kept telling me it was all in my head, I hate going to the doctor and never had gone in the past so for someone to say it was in my head was horrible.

    Oct 2011 - Present
    - floaters and flashed
    - had retinal tear treated and repaired with laser (right after laser treatment is when all the major symptoms came back on me full force)
    - vision problems (retinal surgeon says eyes optic neuritis)
    - Left side jaw weakness (feels like it will stop working if i use it too much but it hasn't yet)
    - left side neck weakness
    - left side swallowing problem (hyoid bone popping like crazy when i swallow)
    massive pressure headaches (CT scan showed swelling in my left side rear brain area)
    - left side face burning and radiating heat
    - left arm and shoulder radiating heat
    - left eye pressure pain
    - major fatigue
    - difficulty concentrating
    - difficulty remembering names and things I used to remember quickly
    - depression (due to not knowing what the hell is going on for 5 years)
    - Left hand gets really cold to the touch (I am a lefty)
    - Body temp low when waking up 97.1 on average
    - forehead scaly, dry and flaking off skin
    - pain in certain points on my spine (feels like pressure pains)
    - Left shoulder feels like jello
    - Feel stronger in the morning and by time work is done I feel very tired, weak and need pain killers
    - muscles twitching all over my body

    These symptoms have gotten better and gotten worse a few times over the past 5 years. They are at their worst now.

    Family History of Sickness:
    4 generations of Thyroid issues from graves disease to hypothyroidism on my fathers side
    Grandmother died of ALS age 71, only case of this disease noted in the family (this was on my mothers side) all other family members lived to very old ages (my grandmothers sister just died at 94)
    Current drugs:

    1 mg of klonopin at night (last 5 years)
    500mg vicodin (need at least two of these at night for pain and uncomfortable feeling) only been taking this for the last 3 weeks
    Somehow this really helps me feel better, my jaw feels less weak if that makes any sense, don't want to be on this anymore

    I am a smart guy and very level headed so I think I have some kind of recurrent disorder that keeps coming back due to stress and other conditions but I need to know what it really is.

    I have gotten no help on this for a very long time and I could really use some help here.

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    Old 12-20-2011, 05:49 AM   #2
    UKdave's Avatar
    Join Date: Sep 2011
    Location: Leicester England
    Posts: 9
    UKdave HB User
    Re: I really Need Help Here - Comprehensive List of Symptoms

    Wow NKS,,, Im sorry you have felt so bad for so long. I am probably not the best person to post first as i am confused as you are about what is going on with me. I was trying to find the right place to post when i found your post.

    Im a 41 male in the uk... Was, up until this summer, super fit. then i got a virus or infection which has destroyed my life with continual throat / chest / sinus infections, and has over the past month become very worryingly neurolgical. i have hand tremmors, twitches / spasms all over, creeping skin sensations, cramps and bouts of extreme dizziness / light headedness, the type where your balance feels wrong.

    I have decided i will post here, so please have a read of my ramblings. I know our stories arent identical, but there are similarities. I will keep an eye on your post to see if you get any helpful responses.

    if it is any help, you are clearly not alone. You also clearly have the the intelligence and fortitude to get to the bottom of your issues and to successfully fight them.

    Kind regards.


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