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My muscles twitch, hurt, and burn out quickly. Also my joints pop excessively.

Posted , 6 users are following.

Akjrod83
Akjrod83

I'm at 33 y/o male. Let me start from the beginning about 6 weeks ago I woke up with an eye floater. I figured it would pass, but when I didn't I saw my eye DR. He did a full examination and told me he didn't think it was serious, and sometimes happens when the liquid in your eye crystallizes. But to come back it it got worse and I saw peppered spots. Being the person I am I worry, so I got an MRI done. Completely clear. Then I began having pain in my shoulders and upper back. This worried me further. Then I began having pain in my joints in my arms. (More worry) A week or so later I started noticing muscle twitches mainly in my calfs and biceps. I decided to looked it up and the first thing I saw was ALS. This is where my nightmare began! This scared me to no end. I have a new baby boy on the way, all I think of is I won't be here for him and my wife. From there I noticed my muscles here burning out quickly and would start shaking if I used them too much. I went to first care and they are the gamut of blood tests on me, just about every one you and have. All came back normal. I was referred to a neurologist. (Waiting in the appointment) Since then my joints in my knees, shoulders, elbows and hands pop all the time. Now my arms and legs are sore all the time and it I even stretch is causes me pain. Also I get little twitches by my eyes, and my hand are a bit shaky. Please someone help me!

0 likes, 15 replies

15 Replies

  • lisalisatheone
    lisalisatheone Akjrod83

    Posted

    Hi. Make sure they do plenty of autoimmune testing! Crp, esr --two blood tests that determine inflammation should be done as well but don't forget to ask for those blood tests along with autoimmune tests. I have many

    Of your symptoms and been diagnosed with an autoimmune condition. Don't worry about things until you have to...dr google is wrong a lot of times

    • Akjrod83
      Akjrod83 lisalisatheone

      Posted

      Thank you!

      I'm At the point where it hurts to do pretty much anything. I begin to tremble when I put any weight on my arms. It's becoming very discouraging.

  • PeterAK
    PeterAK Akjrod83

    Posted

    Don't worry about the ALS, when I used to do this kind of search ALS always seemed to come up. A suggestion if you haven't already done it is to check back into your family history, talk to grandparents, uncles, aunts, etc. to see if these kind of things happened to other members of your family. My family has lots of autoimmune conditions and I so do I. Hope you get a diagnosis quickly.

    • Akjrod83
      Akjrod83 PeterAK

      Posted

      Thank you, Peter.

      My mother and father both told me nothing like this that they were aware of.

  • Guest
    Guest Akjrod83

    Posted

    Hi, you mention that you had blood tests done. Did they include a thyroid function test (TSH, FT4)? 
    • Akjrod83
      Akjrod83 Guest

      Posted

      I am pretty sure I recall them saying they did. I will look into it.
  • PeterAK
    PeterAK Akjrod83

    Posted

    Ran your symtoms by my wife who teaches anatomy and she speculated it may be some sort of connective tissue disease, of which there are many, typically autoimmune. If it is this, many different treatments are available depending on the exact diagosis and these are improving rapidly. Remember correct diagnosis is the key to effective treatment no matter what the condition, and if you have any doubts get a second opinion.
    • Akjrod83
      Akjrod83 PeterAK

      Posted

      What kind of Dr/specialist would you recommend I see? I have an appointment with GP coming up. We need a game plan. I hate living like this. I will definitely mention the autoimmune/ connective tissue disease.
    • PeterAK
      PeterAK Akjrod83

      Posted

      You would typically see a Rheumatologist, but other specialists may become involved depending on the diagnosis. There is a lot of information in the NORD (National Organization of Rare Diseases) web page although you will have to know medical terms. I keep a word file with a glossary. Diagnosis can be tricky with autoimmune conditions, tests can be inconclusive and symptoms not defining. A doctor may assume a diagnosis and start treatment and then modify it later as more info becomes available. Be cautious of doctors that are absolutely sure they know what you have.

      Take someone with you to your Doctor’s appointment to take notes. I am always surprised what a second person will hear that I don’t. Also, you need a list of questions, give a copy to the doctor, it speeds up the dialog. Appointments are typically to short today for complex conditions. If possible take copies of recent lab and imaging reports to your appointment, the doctor will not have to spend time looking for them. Afterwards research things you don’t understand.

    • Akjrod83
      Akjrod83 PeterAK

      Posted

      Thank you again, Peter. This is great info for me going into my GP appointment. Greatly, greatly appreciated. God bless.
    • Akjrod83
      Akjrod83 PeterAK

      Posted

      Also could you assist me in what questions I should have?
    • Akjrod83
      Akjrod83

      Posted

      I just want it to be completely prepared for this when I get there. Any help would be amazing.
    • PeterAK
      PeterAK Akjrod83

      Posted

      Been out for a few days, 50th class reuniuon. Basically you need to write out your symptoms and their history, get everything organized and described as best you can. My doctors always appreciated that, then they ask questions. You should also be able to develope questions as you write the history.

      Also stress is very detrimental in autoimmune diseases, and I am sure you have stress. To de-stress I use acupunture, and I am trying neurofeedback. But you can use meditation, yoga, if a fisherman - fishing, etc. Your doctor may be able to give you referrals for some of these to help with cost. I brought on total remission of my MG in a major de-stress event but it went away eventually.

    • Neo2ooo
      Neo2ooo Akjrod83

      Posted

      Hello, I am having your same symptoms. I was wondering how you are doing since your last reply was 4 months ago.
  • justin75750
    justin75750 Akjrod83

    Posted

    Akjrod83 , hey man.. this is the second post I've seen you on brother.. we have the same symptoms.. from the eye floater to the muscle twitches and soreness.. I also have heart that radiates off my body where the muscles are sore and shake upon exertion .. it's all over, but it seemed like it started on my left upper back by my shoulder blade and my ribs.. it's on both sides but worse on my left.. now there's itching involved and it's hard to swallow..

    you know it's crazy how we have the same thing going on but could be totally different.. I am having allergy problems and heart rate problems too.. send me a message and we'll talk. I have a ct of my chest with contrast tomorrow. I've done extensive research on diseases it could be maybe we could help each other out. My upper back also feels like it's dead but I can still feel it to the touch and muscles still work.. just weak.

    This started in March. And it has come in flares but pretty much constant. My labs have all come back fine.. no Lymes no inflammation ( rheumatoid panel neg ) cortisol normal ( no reflux test though) ct no contrast of head normal ( two of them) three xrays chest normal...

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