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    Old 03-04-2020, 05:17 PM   #1
    samsasm
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    Unhappy I was a healthy 29 years old, until ...

    I'm looking for any guidance in trying to get a diagnosis, so any input is helpful.

    I was a very healthy active 29 y/o, until...
    April 2018 - I got the flu. Not a big deal. I was fine in a few days.

    May 2018 - hands went numb. PCP diagnosed with bilateral carpal tunnel syndrome.

    June 2018 - diagnosed with bilateral cubital tunnel syndrome.

    It didn't make any sense. Why would four my nerves decide to get "pinched" all of a sudden within one month? It's still mind boggling to me.

    At this point, my arms were in extreme migratory pain. I saw a neurologist and an orthopedic surgeon who couldn't explain the pain.

    November 2018 - I had EMG and NCV for the nerves which both came back negative. The neurologist who performed the test couldn't explain my hand numbness or the pain. The pain resolved itself around January 2019. Since then it comes and goes but has not been persistent as when it first started. According to the doctor, my neck/spine is not the cause of numbness/pain (based on physical exam).

    Around the same time, I started having symptoms of piriformis syndrome on the left side. Symptoms came and went but have been almost everyday since August 2019.

    December 2018 - I fell and hurt both knees. PT diagnosed with patellarfemoral (sp?) syndrome. X ray was normal. My knees still hurt but at least that pain has an explanation. PT hasn't helped.

    February 2019 - developed posterior tibial tendinitis in both ankles. Podiatrist says it's because I over worked my ankles but it doesn't make sense. My tendinitis has improved since, but I get random aches in different parts of my ankles on daily basis and my feet hurt if standing for more than ten minutes. Standing/walking stamina is diminished.

    In addition, in the last few months, following joints have started clicking and popping excessively (without pain). Left ankle, both hip joint, both shoulders, left wrist. At night, when turning, my whole body crunches.

    I feel some random pain in muscles. I couldn't do a single sweeping motion few weeks ago without pain in left forearm, which was new.

    My nerves are extremely tight. My lower body falls asleep on daily basis (not caused by back based on MRI). But I don't know why they're so tight. If I hip hinge at about 30 degree angle, both legs fall asleep in less than a minute. I am living a pretty disabled lifestyle right now due to all the aches and pains. Getting in and out of a car seems like a chore.

    Autoimmune biomarkers were all negative. Basic bloodwork is all normal.

    Results from 2018:
    ANA Direct - Negative
    RPR - Negative
    CRP - Negative
    ESR - Negative
    TSH - Normal
    Folate - Normal

    Any input on what it could be?

    Here are some updates:

    New joint pain in fingers and toes as of 3/9/2020 with excessive popping and clicking.

    Results March 2020:

    Uric Acid - Normal
    RA Profile - Negative for both RA latex turbid and CCP Antibodies
    ANA Direct - Negative
    CRP - Negative
    ESR - HIGH (36)

    Lyme test 3/3/2020 - with IgM 0.95 (equivocal). No bands show for IgG or IgM, so I was informed that the results are negative overall.

    Lyme test 3/12/2020 (it was re-run due to error/incompetency of my doctor's office, though can't complain about it) - IgM 0.88 (still equivocal). IgG P18 band shows up - so overall still negative according to CDC.

    Any input is welcome! Thanks!

    Last edited by samsasm; 03-23-2020 at 06:40 AM. Reason: New Blood Results

     
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    Old 03-05-2020, 07:55 AM   #2
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    Re: I was a healthy 29 years old, until ...

    Hi, samsasm,

    You said basic bloodwork was normal. But basic bloodwork doesn't include everything. For example, they don't test for all vitamins and minerals. They usually test for B12 and B6, but there are many other forms of B vitamins.

    As far as I know, there's no microbiome health test. There's no test for how much fiber you're getting in your diet, which is important for the health of your immune system.

    So what I'm getting at is: Perhaps you started a special weight loss diet before you started getting strange symptoms. It could take a few months or several months before symptoms show up if you're not getting all the nutrients you need.

    You haven't said anything about your height/weight (BMI) or what kind of diet you're on. It also helps to know your percentage of body fat because some "normal weight" people have a high percentage of body fat.

     
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    Old 03-05-2020, 05:18 PM   #3
    samsasm
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    Re: I was a healthy 29 years old, until ...

    B6 and B12 normal.

    I am 5'4" and weighed 125 at the time. I have gained some weight since then due to lack of activity (140 lbs now).

    I have been on a few diets on and off, but with plenty of fruits and vegetables in it. My diets usually involved portion control or avoiding processed carbs.

     
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    Old 03-06-2020, 04:33 PM   #4
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    Re: I was a healthy 29 years old, until ...

    See a Rheumatologist...you need additional tests and bloodwork..this doctor can help you determine if it is autoimmune. Sounds allot like Rheumatoid Arthritis, which is an autoimmune disease.
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    Old 03-06-2020, 05:52 PM   #5
    samsasm
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    Re: I was a healthy 29 years old, until ...

    I did see one. My autoimmune biomarkers were negative, so no luck getting a diagnosis there ☹️

     
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    Old 03-07-2020, 07:44 AM   #6
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    Re: I was a healthy 29 years old, until ...

    Quote:
    Originally Posted by samsasm View Post
    ... April 2018 - I got the flu. Not a big deal. I was fine in a few days.
    Usually the flu lasts 7-10 days. Are you sure it was the flu?

    Quote:
    The pain resolved itself around January 2019. Since then it comes and goes but has not been persistent as when it first started.

    Around the same time, I started having symptoms of piriformis syndrome on the left side. Symptoms came and went but have been almost everyday since August 2019.
    Your nerve and muscle symptoms are varied and seem to effect almost every part of your body. If it was me I would try to rule out being effected by some type of parasite and/or lyme disease, and not by the flu back in April 2018. I would try to get an appointment with a highly recommended parasitic infectious disease specialist.

    Not being a healthcare professional, I am just posting some thoughts that I had.

    Around the time of your flu, did you have any insect bites, or visit a foreign country or eat any raw seafood, or have any other unusual occurrence or reaction?

    Regards, and get better! Bob
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    Old 03-07-2020, 07:52 AM   #7
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    Re: I was a healthy 29 years old, until ...

    Hi, samsasm,

    When you got the flu in April 2018 did you take any medication by prescription or over-the-counter? I'm asking because you said your hands went numb in May of 2018. Thousands of medications can prevent the absorption of Biotin (B7) and that can lead to nerve pain and numbness.

    Other than deficiency being caused by medications, it can also be dietary or genetic. If not triggered my taking a medication, perhaps the flu itself triggered a genetic reaction.

    Biotin deficiency is rare but worth looking into, in my opinion.

     
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    Old 03-07-2020, 08:23 AM   #8
    samsasm
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    Re: I was a healthy 29 years old, until ...

    Quote:
    Originally Posted by JohnR41 View Post
    Hi, samsasm,

    When you got the flu in April 2018 did you take any medication by prescription or over-the-counter? I'm asking because you said your hands went numb in May of 2018. Thousands of medications can prevent the absorption of Biotin (B7) and that can lead to nerve pain and numbness.

    Other than deficiency being caused by medications, it can also be dietary or genetic. If not triggered my taking a medication, perhaps the flu itself triggered a genetic reaction.

    Biotin deficiency is rare but worth looking into, in my opinion.
    I was prescribed Tamiflu at the time. I will look into the potential side effects and biotin absorption.

    Thank you for the input. I am hoping to have my healthy body back one day, hopefully soon. 🙂

     
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    Old 03-08-2020, 08:51 AM   #9
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    Re: I was a healthy 29 years old, until ...

    You need an MRI, with and without contrast, of the brain and spine. Blood work isn't going to tell you much about the numbness. I can't believe your neurologist didn't order one.

     
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    Old 03-26-2020, 03:21 PM   #10
    samsasm
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    Re: I was a healthy 29 years old, until ...

    I definitely don't remember any insect bites, no travel etc either.

    I had a lyme disease test done, which came back negative. The doctor's office did the lyme disease test again (by a mistake) and it came back "fishy"

    It's still negative according to the CDC guidelines. However, my primary care has referred me to an Infectious Disease Specialist. Waiting for them to review my paperwork now and hopefully get an appointment.

    Thank you very much for the input! Hopefully I can figure this thing out and get my life back!

    Thank you so much!!

     
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    Old 03-26-2020, 03:23 PM   #11
    samsasm
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    Re: I was a healthy 29 years old, until ...

    Quote:
    Originally Posted by tiredesq View Post
    You need an MRI, with and without contrast, of the brain and spine. Blood work isn't going to tell you much about the numbness. I can't believe your neurologist didn't order one.

    I am seeing a new neurologist in 3 weeks and trying to get an appointment with an ID specialist and hopefully that gets me somewhere.

    Thank you for the support! It is truly appreciated!

     
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