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Thread: Mystery symptoms, please help and please give advice?,

  1. #1

    Default Mystery symptoms, please help and please give advice?,

    I posted in a general forum but thought I would post in here..

    Hey guys
    First time on here for me, I am a 30 year old male from Melbourne Australia...

    My symptoms have been ongoing for almost four-5 years now with no diagnosis what so ever and are not stopping only getting worse.. Symptoms are as follows ..

    Started with waking up with super tight feet I had to stretch, it then went to a shoulder as well each morning I would have to move shoulder and stretch feet, throughout the day they were fine unless I relaxed for long periods and they would become stiff again and sore..

    I then noticed at the gym one side of my body felt cold and numb like it was getting no blood no pump to it..



    Besides that I had some general fatigue, the odd muscle twitch here and there this is how it all started..

    Then one day I felt numb in one side of my face and I felt pins and needles or pin pricks like feeling in one of my shins.. Then all of a sudden over 2 days i did some gardening and noticed my right hand tremoring and very weak so i stopped, the next day i played basketball and that night all hell broke lose on my body and i woke with twitches all over and jerks that lead into these symptoms..

    symptoms:
    1. high quantity of twitches everywhere in my body, you name it, i have twitched (still current)
    2. postural tremors felt and seen as well as tremors if holding weight etc on any limb, body part (still current)
    3. Proximal muscle pain and feeling of weakness
    3. myclonic sleep jerks and now some electric shock type jerks whilst awake that move my body and a limb (still current)
    4. GERD, heartburn, scalloped tongue, slurring of some words my th's sometimes turn to f's, tongue biting on occasion whilst eating (still current)..food getting stuck in throat and needing a extra swallow
    5. extreme muscle stiffness throughout whole body, feels difficult to hold my posture most days (still current)
    6. extreme muscle pain that is sporadic and all over body periodically like sharp pains or deep pain (still current)
    7. tingles, burning, ticklish itchiness that drives my crazy through out my whole body (still current)
    8. a few cramps that kill or a feeling of a cramp like deep pain through out body parts, like pinching, like someone pinching me (still current)
    9. extreme clicking of joints with pain involved, some ache without use and other days always in pain under stress (still current)
    10. Got some issues downstairs like irritation and some impotence in dribbling urine .. not full blown impotence, can't get erection standing up anymore just laying down..
    11. Eye floaters and had some brain fog where I didn't know a limb belonged to me that was blocking the TV vision it happen to my leg it was very weird and I am Mis reading words
    12. Lots of stomach issues and bowel issues, feel like vomiting most mornings.


    I have lumbar stenosis, degenerative discs, bulging discs in lower back and some thoraciic.


    medical history for these symptoms
    1. 8 neuro visits:
    2. clinical exams always fine and passed, no clinical weakness seen even tho i feel weak and am tremoring and less stable
    3. 5 emgs over 2 years, first emg was suggestive of mild chronic denervation, the other 4 were completely normal and clean
    4. Dismissed by rheumatologist, said I was clean
    5. All endocrine issues are fine besides a low vitamin d
    6. Brain MRI is fine besides non specific white matter
    7. Slightly elevated spinal fluid diagnosed with intracranial hypertension but currently not getting treated for it as neuro said let's just monitor it and pseudopapildemia in my eyes
    8. Kennedys disease blood test normal
    9. Elevated ESR and CRP bloods
    10. Break out of red blot dots all over my body like petechia I think they are called
    11. Had a feeling of fluid in my head since I was little and it makes my dizzy and I can hear my heart beat in my ear when I get up or a swooshing sound and I'm dizzy

    After 4-5 years of symptoms can I rule out ALS? I'm still walking and talking after all this come on..

    Some people suggested Lyme disease but I live in Australia and couldn't see that as a possibility.

    Anyone at all have I idea of what could be going on?

  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Trent12))))))

    To BrainTalk!

    You certainly have a panorama of symptoms. Iím so sorry that you are struggling with all of these issues and are without a diagnosis.

    Has Multiple Sclerosis been ruled out? Sometimes MS is difficult to diagnose.

    Being low in Vitamin D can indicate an autoimmune disorder. Are you taking Vitamin D3 with cholecaciferol to increase your Vitamin D level?

    Could some of your symptoms be related to your spinal issues?

    How's your heart? Your circulation? Your oxygenation (oxygen levels in the blood)?

    Have you had blood work to test your thyroid and adrenal gland levels? I see youíve consulted an endocrinologist.

    Have you consulted the following specialists for your specific symptoms:

    Gastroenterologist (GI): Stomach and bowel issues; GERD

    Urologist: Urinary issues; impotence/erectile issues; prostate

    Nephrologist: Kidney issues (itching and rash, as youíve described, can be related to kidney problems)

    Petechiae:

    http://www.mayoclinic.org/symptoms/p...n/sym-20050724

    Have seizures/epilepsy been ruled out?

    Are you taking any prescription medications? Do you know what their side effects are?

    Have you been exposed to any toxic chemicals? Do you have mold in your home?

    Unfortunately, I have many questions, and no answers for you. But I'll do my best to help you through the maze of your symptoms, if I can.

    I recommend that you post on our MS Forum, copy and paste this post to a new thread in the MS Forum, and title it, something like: "Are these MS Symptoms?"

    http://braintalkcommunities.org/foru...iple-Sclerosis

    And, you might want to post on our Spinal Disorders forum,

    http://braintalkcommunities.org/foru...inal-Disorders

    as well as our Chronic Pain Forum, where you will find others, who have similar spinal issues.

    http://braintalkcommunities.org/foru...9-Chronic-Pain

    Title those new threads, something such as: "Do These Symptoms Sound Familiar?"

    Those forums are more active than this one, and you will get more responses to help you.

    Meanwhile, while obvious causes may have been ruled out, less obvious, or rare, possibilities for your symptoms should be explored by your physicians. And if your physicians aren't doing that, then you need to start doing that by researching your symptoms on the internet. Mayo Clinic is a good place to begin, and our Forum Listing page gives a synopsis of every condition we have covered at BrainTalk.

    http://braintalkcommunities.org/forum.php

    Sending up a healing prayer for you, Trent12 ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  3. #3
    Distinguished Community Member agate's Avatar
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    Hi Trent12--WELCOME to BrainTalk!

    We're not doctors here but I'm wondering about the 8 neuro visits you mention. Were these visits to the same neuro or to different ones? And were they close together in time or were they years apart?


    The MRI was ordered by a neuro, or no? When you say: "Brain MRI is fine except for nonspecific white matter" I wonder if that was supposed to read "...nonspecific white matter lesions"? Or maybe "white matter hypointensities"?

    It's hard to add anything to Rose's excellent post. She has covered all the bases.

    I did wonder if the same neuro had seen you over a considerable time and if that neuro was looking carefully at your previous record. Some neurological disorders have to be observed over time before what's going on becomes clear. MS seems to be one of them--notoriously difficult to diagnose.

    I hope you'll have some answers soon!
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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