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Mystery illness, does this sound like spine problems?

jaycooljjaycool Posts: 4
edited 03/07/2015 - 7:36 AM in Chronic Pain
Hi all, i am new to the community, i hope i am posting in the correct place on the forum.

Right now i am going through some awful health issues.. i have long suspected i have back issues.. when i was younger i remember lifting a heavy object and something in my back ripping or making a noise.. now several years later i believe it has caught up to me since back then i believed it would just fix itself (as kids we can think we are invincible).

I've been getting a host of different symptoms.. there was 'one day' 2 years ago where i suddenly fell ill with something and woke up shivering and shaking, my arm even in a relaxed position was shaking almost like how someone does when they are having a seizure. I notice that every time i sit on the toilet my legs are shaking.. It was like that evening any possible neurological symptoms got worse.. the worst sign for me is muscle weakness (especially in the upper arms and upper legs) and any lifting of my arms and legs is hard to do compared to before, i can barely open a can with a tin opener.. at first i thought it was a virus that had knocked out my neurological system.. i noticed my legs were ice cold during this illness but on the outside they felt warm. At that point a physio believed there was a possibility i had myelopathy yet the neurologist my GP refereed me was not having it and sent me for a head MRI instead of a spine one.

Anyway the 'MRI head' came back normal.. any pushing for a spine MRI failed.. the neurologist just wasn't having it.. which meant i had to save up to go have it done privately. I am now waiting for spine MRI results as we speak. I talked recently to a private doctor who says there is a possibility of stenosis by some of the symptoms i told him.

I've also had tremors for the last 6 years.. and numerous other issues (if you want to know other symptoms i can share them).. for the last ten years ive had back pain.. the last 2 years is when it got really bad, that is when i really started to go on a goose chase to finally get a handle on what causing my pain and discomfort. My global muscle weakness was something that came on in the last 2 years.. i can only describe it as chronic fatigue.. lifting my legs and arms is difficult and i can no longer work, socialize and exercise for very long. This is progressively getting worse.

My reasons for thinking it is spine related is because i will have chest pain that sometimes disappears when i lean back, my spine clicks and the chest tightness disappears after the click.. other signs are that i will have shooting pains simultaneously, so i may have one shooting pain in say my back then at the same time i have one in my thigh.. I remember this one time when i was hoovering a few months back and i bent down and something shot up my back. I even find it hard to get out of a sitting position to standing up.

I hope to get some answers soon to this, i will be devastated if my results come back null. My life is being wasted by this health issue, i am confident something will be diagnosed.. I have been for various other tests/scans (let me know if you want to know about those if it shortens the list of problems).. If anyone has has idea to what i might be suffering from.. or can relate in some way please let me know. Cheers


  • LizLiz Posts: 7,832
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    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • itsautonomicitsautonomic LouisianaPosts: 1,817
    Cold feeling on inside with warm to touch could suggests neurapathy. The neuro tested MS with brain MRI most likely. I suggest neuromuscular vs. neurologist for these types of issues. Yes I would like to see the list of testing you have been through. There is almost certainly answers out there , but the process can be a long , hard road of many doctors, potential disbelief by doctors and alot of suffering. I think you have given the doctors you have seen enough time in my opinion, its time to elevate to either top rated doctors or teaching hospital. If the doctors you are seeing are not familiar with the disorder you may ultimatly have or have the right testing protocol to find it , it does not mean nothing is wrong it just means with that doctor it will not be found. Keep searching, you will find the answers but you have to advocate for yourself above all. Its not friendship its your health, if the doctor is not offering to find the issue no matter what its time to find one that will. The list of what it could be is a mile long so dont delay.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • Hi itautonomic, thanks for the reply. I appreciate the advice and encouragement..

    I can only say i have been on a wild goose chase the last 4 months, i recently had some blood work but that looked ok as well an ECG which was normal, there are times when i get all kinds of chest pain which i think is being refereed from my thoracic spine.

    In the early days (i was about 18) i had lots of shooting pain in my chest (as well as my chest going really warm) which was scary for me as a teen, back then i was convinced it was my heart or a blood problem.. but nowadays i can see things better and i am sure its the spine doing this or at least a nerve related disorder. The many trips i took to the emergency department was many but my ECG were always fine.. its just a shame the doctors and nurses back then did not suggest i might be having refereed pain, they simply said it was anxiety :-) i then grew up thinking anxiety caused these sharp shooting pains and numbness..

    Yep feeling cold in the legs but warm on the outside made me think "i am glad this is not something like a blood clot".. I too believe he wanted to rule out MS..
    Another odd sensation i had was the feeling that rain was touching my shoulders when i was inside the house.. this really weirded me out.

    Recently (about 3 months ago) i went for an EMG and nerve conduction test that came back healthy, 99.9% fine. That made me feel good in that there was probably a lot ruled out.. but of course the muscle and joint aches i was getting were just one reason i chose to do that test. Now i must think about what my plan B is if the MRI comes back empty.

    I just hope the spine MRI i just had gets me closer to a diagnosis.. without a diagnosis i cannot prove i am not fit to work and this is doing a number on my finances, having health and mobility problems but not being diagnosed is terrible. If the results come back normal i will be baffled to say the least. After all the shooting pains, tingling and numbness and coldness i have had over the years i dont know if that is even possible.

    I DO feel like im getting somewhere slowly but surely, thats the most important thing i guess.. however it is getting to the stage now where i really need an answer soon, i dont feel like i can last much longer with the pain and i know deep down my symptoms are progressively getting worse, i feel that the spine may be putting lots of pressure on my organs. I hope to have these results back by Monday. Fingers crossed!
  • itsautonomicitsautonomic LouisianaPosts: 1,817
    Good EMG only means large fiber nerves are ok, most drs don't deal w ith small fiber neurapathy. EMG / nerve conduction means nothing in small fiber nerves
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • Hi again.

    I have to admit i went for the EMG/NCS because i was really scared i had something serious going on.. so its good to know that this rules out many serious illnesses and diseases. You said something about small fiber neurapthy, by this do you mean say the effects of a slipped disc and such which might cause pinched nerves? Does a normal EMG rule out mylopathy and stenosis?

  • itsautonomicitsautonomic LouisianaPosts: 1,817
    Normal EMG does not rule out anything it just makes the chances of having something dealing with large fiber nerves rare but their is always a percentage of error in almost any test. You can still have some of those things and a normal EMG/ nerve test. The small fiber nerves just don't show up onEMG/nerve conduction testing no matter what it comes from.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
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