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shaky muscles and off balance

Posted , 10 users are following.

kelvin91301
kelvin91301

Hello All,

Hello All,

So just over a year ago I experienced this sudden feeling of being off balance one morning, I had had this feeling for about a week a few months previously but it went away on its own.

It feels like whichever way I shift my body weight it feels like I’m being pulled to that side, this feeling is in my neck, upper body and legs. It has also affected my limbs, for example my arms feel very heavy now so do my wrists, my legs also feel heavy, it has also affected my speech as my speech is now very shaky. I have seen a neurologist, rheumatologist, orthopaedic Surgeon, Chiropractor and have all the necessary tests (blood tests, MRI of brain, C spine etc and they did not find anything).

The one thing however that is bothering me more than anything is they shaking that has developed in what seems to be all my muscles. When I extend my legs, arms (Shoulders), wrists and neck the muscles shaky uncontrollably and I cannot for the life of me understand why this is, it has made simply speaking difficult as I can feel my voice shaking and muscles in the back of my neck shaking when I move my neck. The shaking is only ever triggered with movement, if I raise both arms in the air, my shoulders and forearms shake when my arms are extended and retracted. The most noticeable one however is in my legs, when I extend or retracted my legs, the rubber band like tendon or muscles that runs down the back of the leg and knee shakes uncontrollably making the whole leg shake and it radiates up towards my pelvis and torso, causing further shaking.

It is incredibly frustrating because the only way I feel that I can see what is happening with my muscles is to have a dynamic ultrasound of the tendons and ligaments in my legs, arms and neck to really see what is triggering this shaking however no specialist wants to refer me for this, even with private insurance.

If anyone here is suffering with something similar or has received any answers please let me know or if anyone has any suggests, I know there is someone out there who is suffering with the exact same thing.

Thanks

1 like, 30 replies

30 Replies

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  • faye70665
    faye70665 kelvin91301

    Posted

    Hi Kelvin, I too have the same symptoms as you plus a few more.My doctor says

    that every nerve in my neck is pinched and that is what's causing all my symptoms he is a neurologist and a very good one. I have severe osteoarthritis and disc disease along with ankylosing spondylitis. However he always says that my neck is what's causing all these problems. I was told no surgery would help me and that only thing can be done is physical therapy from time to time and opiates ,that is it. I am very sorry for your troubles I wish you good luck.

    • kelvin91301
      kelvin91301 faye70665

      Posted

      Hi Faye,

      Thanks for your response, You suffer from this bizarre shaking also. How did you come to find out that the nerves in your neck are pinched? did you have an MRI of your neck? I have been seeing a neurologist but I have only had an MRI of my brain and C Spine not of my neck. Also how did you come to learn about the other problems you are currently experiencing? Thank you, I hope you're doing better through therapy.

      Kind Regards

    • faye70665
      faye70665 kelvin91301

      Posted

      Hi Kelvin,

       I had an mri with dye.C spine is cervical which is the neck.I had another mri with dye recently and neuro said nothing had changed.I asked about every problem I was having and he said all related to the neck.They have a chart that tells them what is affected by each nerve.He showed it to me.Pretty amazing.

  • ichan0001
    ichan0001 kelvin91301

    Posted

    Try to have a full mri of your spine. Update us pls thanks
    • kelvin91301
      kelvin91301 ichan0001

      Posted

      I wasn't aware they did full spine MRI's, I'll ask my neurologist if this is possible

    • derek76
      derek76 kelvin91301

      Posted

      I had one two years ago and my wife had one on Friday.

      They call it a three part MRI scan as each section of the spine is done separately. They take about 55 minutes to do.

      If you are in the UK the NHS will be reluctant to pay for it.

      My wife's one cost £651 at one of the Spire hospitals. Mine was about a £1000 at a different location as I have an MRI compatible pacemaker and not many scanning units have the protocol to do it.

      Some London units have odd times of day when they are reduced.

    • kelvin91301
      kelvin91301 derek76

      Posted

      Ah ok, I'm also in the UK, I have private medical insurance but I have no idea how I would convince a specialist to refer me for a 3 part MRI

    • derek76
      derek76 kelvin91301

      Posted

      They seem to have already referred you for a lot of expensive tests. Ask him if he thinks it would show anything or ask him to refer you to a neuro surgeon who would want a spinal MRI.

      Have you at any time in the past been prescribed Cipro or Fluroquinolones for any infections as they (as in my case ) can cause  many delayed side effects or can be triggered by other medications or steroids 

    • kelvin91301
      kelvin91301 derek76

      Posted

      I'll ask him, these specialists can be very stubborn when it comes to requesting tests and referrals, they think your doing their job for them, but I'll ask none the less.

      No I have never been prescribed them to my knowledge, thanks.

    • sandramgd
      sandramgd ichan0001

      Posted

      I have the same thing going on...been to ALL doctors and after 3 years this is still happening.

      Had full MRI off spine and they said a bit of narrowing spine and stenosis but not much.

      Can this be anxiety or is this a Spine-issue...?

      My neuro told me I have : RLS but I don't know what to think about this...

      Thanks for any info!

      Sandee

  • Guest
    Guest kelvin91301

    Posted

    Hi Kelvin,

    I have symptoms very similar to you, problems with balance, heavy muscles, and muscles shake when contracting and relaxing them and I get a lot of muscle twitching when at rest. I also have other symptoms that have progressed over time, this all started about 2.5 years ago for me. I spent a year having tests at my local hospital, MRI, bloods, EEG, EMG, CSF analysis, everything was normal. I was referred to a specialist neurological hospital last year. I had one blood test done there (which I was told would likely be negative), and it was positive for anti-bodies that are associated with some of my symptoms but not all of them. They are incredibly rare, less than 200 people in the UK have them but they are much more common in men. It may be worth checking you have had a VGKC blood test done. 

    Good luck. 

    • kelvin91301
      kelvin91301 Guest

      Posted

      Hello,

      Thanks for your response, that's interesting I have no idea if I have had a VGKC blood test done, if you don't mind me asking, could you give me a brief outline as to how your symptoms started, also which hospital carried out the test and how have you been feeling since finding out?

      Thanks

    • derek76
      derek76 Guest

      Posted

      Where is the specialist hospital? I was told that the centre of excellence is in Bristol
    • Guest
      Guest derek76

      Posted

      There are several 'centres of excellence,' in the UK but I guess it also depends what you want excellence in. In London there is the National Hospital for Neurology and Neurosurgery. It's part of UCLH. 

    • Guest
      Guest kelvin91301

      Posted

      Hi Kelvin,

      Mine started with feeling like I was rocking from side to side and unusual bouts of tinnitus. It progressed to the heavy limbs, problems thinking clearly, fatigue, racing heart when sitting still and muscle twitching amongst other things. It's unlikely you have a VGKC anti-body as it is so rare but that is what I was told and I had them! I just know it's hard when tests keep coming back normal and you know something is wrong. If you google VGKC antibodies you will find some info on them but as it's rare, it's all quite medical literature that is available. It's not on the NHS website! I have been seen at the National Hospital for Neurology and Neurosurgery in London but Oxford John Radcliffe also see patients with them. I have had high dose IV steroids (which I have now stopped) and Plasma Exchange which I am having again soon. I noticed significant improvement for a few weeks after treatment but then deteriorate. We, (me and the consultant) are seeing what works but I'm feeling hopeful that something positive happens with the treatment. It's a bit of a journey rather than take a pill and your done. 

      On the MRI front, I had a full spine and brain MRI with and without a contrast dye two weeks ago. It took nearly an hour and a half! I don't know the results yet but I am expecting and hoping it to be normal. 

      BP 

    • kelvin91301
      kelvin91301 Guest

      Posted

      I see, my symptoms came on pretty much overnight in the case of the off balance feeling, the shaking developed a little later on. who made your referral to the hospitals mentioned in your post because I have been thinking about going to the National Hospital for Neurology to be seen?
    • Guest
      Guest kelvin91301

      Posted

      I was referred by my neurologist at my local hospital as he couldn’t figure it out. If you are still under a hospital I believe they can order the blood test and it gets sent to a specialist lab. Initially it took about 6 weeks before my result came back. Good luck. 
    • kelvin91301
      kelvin91301 Guest

      Posted

      Hello,

      I have asked for a referral to the National Hospital to be seen, do you remember which doctor saw you as I am told there is a particular doctor to see, you can pm it to me if you do.

      Thanks

    • Guest
      Guest kelvin91301

      Posted

      Kelvin, I cannot work how to PM you on here. PM me and I can reply. 
    • Guest
      Guest kelvin91301

      Posted

      I have just seen that you have to enable PM in your settings, have you done this?

       

    • jockboy
      jockboy Guest

      Posted

      I also have VGKC antibodies that were detected at Queen Square National Hospital For Neurology on two separate blood tests

      All started in summer 2015 when I had a brief spell of dizziness followed by occasional an "detached" or slightly off balance or disequilibrium feeling - not like the room was spinning but like I'd just stepped off a boat after a long trip, I would also sometimes feel like I was watching myself if that doesn't sound too ridiculous. I would also feel "full" in my head and occasionally a sinus/nasal type pressure as well as, early on, brain fog. This continued for quite a number of weeks then disappeared.

      Then later in 2015 one day I suddenly had an outbreak of muscle twitching in multiple locations - foot arches, calves, eyelids etc. It was in early 2016 after I'd been referred to Queen Square that the VGKC was first found. Before this I was more or less being treated as a basket-case, having 6 months before never had a health issue or any anxiety about my health.

      Twitching has continued right to this day - over 3 years later - but now included other areas such as the arms, back and tongue, as well as muscle pain and stiffness. I also get the disequilibrium feelings periodically as well.

      I've had several MRI's and blood work along with evoked potentials - all normal except VGKC (which had to be sent to Oxford I think to be tested). Also had 2 EMGs at Queen Square - both showed the fasciculations/twitches but nothing else.

      I've never had plasma exchange, though it was mentioned, nor IVIG. As of the start of this year I've been taking carbamazepine which has certainly reduced some of the stiffness and pain but not the twitching

    • sandramgd
      sandramgd Guest

      Posted

      Are you any better? Do you still have twitching?

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