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  • *PLEASE HELP* twitches, muscle loss/weakness, and tremors (but not ALS)

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    Old 03-03-2017, 10:04 PM   #1
    Cms612
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    Unhappy *PLEASE HELP* twitches, muscle loss/weakness, and tremors (but not ALS)

    Hi Everyone,

    I would be so grateful for some input and help. I have been dealing with some neuromuscular issues that are progressively getting worse and no one can find a clear cause as to what's going on. I was hoping by posting my story here someone might be out there that can help me get to the bottom of this, so I can start healing and getting my life back.

    Symptoms:
    -Action tremors
    -Fasciculations
    -Progressive Muscle weakness
    -Progressive Muscle wasting
    -Achy muscles
    -Decrease in fine motor skills(Left arm/hand is even harder to use then the right)
    -increasing difficulty fully opening hand and straightening fingers fully
    -tendency to curl wrists inward when sleeping

    Diagnosis- idiopathic Small fiber neuropathy

    Doctors seen:
    - 2 neurologists for second opinion (Dr Norman Latov at Cornell Weil and Dr Rebecca Traub at Columbia Presbyterian)
    -infectious disease doctor
    -rheumatologist
    -endocronologist(treats my hypothyroidism)

    Tests done:
    -skin test and diagnosed with "idiopathic small fiber neuropathy"
    - extensive blood work and urine analysis taken from multiple dr's(autoimmune diseases, thyroid, heavy metals,Lyme, etc). Everything normal except for slightly elevated B level in the beginning, all doctors confirmed that would not be causing the issues. Cut back on my b intake in my supps and It shortly stabilized and went back to "normal range".
    -did MRI of brain and Cervical Spine(both looked good)
    -did emg/ncv multiple times as symptoms progressed and results came back within normal range except for the Last time where the ulnar nerve came back a little less responsive. She said it could be aggravated from leaning on it. She had noted that nerves can easily get aggravated when you have a peripheral neuropathy.
    -muscle biopsy that showed an abnormal result. It "Revealed "sparse, atrophic fibers". But not enough showed up in the results for them to tie down a diagnosis.
    -spinal tap (everything looked good)

    -symptoms seemed to stop progressing for about a year so I stopped with the docs. Just recently symptoms began getting worse. A couple of weeks ago(Early February)The inside of my elbows where the bicep starts, started to hurt(this is where I had lost significant muscle within the first week of my condition starting ) recently Felt like bicep would tear from just lifting the lighted object(almost like tendinitis or something soft tissue related?) I have been working out more frequently so that might be related.
    Shortly after that I now had added weakness in my hands(where there is now noticeable atrophy as well) as well as a hard time straightening my fingers, and a similar weakness on the bottom of my feet as well. And Then a couple of days after that symptom I began having an increased intensity in the action tremors, especially fingers and wrists (usually associated with a feeling of weakness and muscle achiness)
    - went back to neuro and he noticed the hand atrophy. He did an emg/ncv to compare to last year's results and everything came back similar(in normal range)except for the ulnar nerve in both arms being worse. Said it was probably from me leaning on my elbows. He then drew blood to do a genetic test that I should get results to within the next 2 weeks. Next steps after that would be nerve and or/muscle biopsy.
    -Went to see integrative doctor, Dr. Maurice Beer and he did igenix Lyme test, and wants me to do a Labrix adrenal profile(saliva test). Thinks it may be autoimmune since I have a history of autoimmune disease(thyroid) Recommended I get on the paleo -Mediterranean diet. Set an appointment to follow up with him in 3 weeks so he can go over my Results and do a physical as well
    - saw a dietician shortly after and she set me up on a paleo-autoimmune diet.

    Medical history:
    -Hypothyroidism(stabilized and taking synthroid)

    -Anxiety and high stress(currently taking Lamictal). Just to note in the chance this might be related to my current condition- I have been on and off meds for anxiety/depression for the last 18 years. Being coined as having a "selective chemistry" I have tried pretty much every drug there is(MAOI's as well) I was seeing a Dr that would put me on cocktails of drugs(that later I found when speaking to other docs was way too much!). Also, when I was younger I used to drink heavily while on the meds.

    -WPW arrhythmia(successfully ablated)

    Last edited by Administrator; 03-03-2017 at 10:59 PM.

     
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    Old 03-04-2017, 11:09 AM   #2
    MSNik
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    Re: *PLEASE HELP* twitches, muscle loss/weakness, and tremors (but not ALS)

    What you are describing sounds exactly like small fiber neuropathy. I am unclear as to what you are asking ....do you doubt the diagnosis?
    You have been to some very good health centers....I would think that they got this one right!
    A high level in Vitamin B could have caused some of your problems, but it looks like you got that straightened out..
    Your EMG results and what the doctor said, sound right too...
    Having a clean Brain MRI rules out anything neurological such as MS...
    How are you feeling now?
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    Old 03-04-2017, 01:40 PM   #3
    Cms612
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    Re: *PLEASE HELP* twitches, muscle loss/weakness, and tremors (but not ALS)

    Hi MsNik! Thanks for the reply I am feeling the same if not worse. I do not doubt the diagnosis. Although, i have a hard time excepting idiopathic as an answer. I want to find out the cause of the neuropathy. That's my biggest mission right now.

     
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    fasciculations, muscle atrophy, small fiber neuropathy, tremors, weakness



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