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Hi All,

Kelvin here. This is my second time posting on this forum, so i'll keep this as short as possible.

Since the end of June 2017 I have been experiencing some ever present symptoms, which include; off balance feeling (this i find to be the toughest to describe, as it feels like when i shift my body weight to the side, backwards and forwards my whole body collapses, it is most present in my neck), this in turn has resulted in what i believe to be some sort of muscle weakness, for example if i was to lift my arms up in the air and release them, they feel like bags full of potatoes, dropping in the way someones arms would if they were asleep or not conscious, this is also the case with my legs, when i do leg raises it gym my legs shake uncontrollably or if i bend them to a certain angle they shake and almost buckle without me ever falling, i have also developed what i can only describe as internal tremors, when i bend forwarf as if to bow, i feel this almost creaking like tremor run down my back, the same when i bend my legs and arms a very noticable shaking, except you cannot see it with the naked eye but i feel it internally, changes to my speech have also occurred, I have noticed my sentences do not flow as they used to and i stutter more than i used to.

Those are the main symptoms I have been experiencing, fortunatley they have not forced me to stop working but I am quite sick of this because I know they are all related as they all began suddenly around the same time. I have seen a Neurologist, Ent, Gastro and I have had an MRI of the head and C Spine, contrast MRA of the neck (which i am awaiting results) and blood tests. I am going to have a blood test for my thyroid function done and I am going back to see a Neurologist to look at the chances I may be suffering from nerve damage. This thought occured to me as my symptoms began a couple of days after an alcohol binge and I am wondering if i may have nerve damage (along the lines of polyneuropathy or some kind of neuropathy) i must say however I am not a frequent drinker, i drink only on social occasions. I just don't understand how these symptoms could all start at the same time if they're not related.

To this day I have no idea what the issue is, every test I have done so far has come back normal and the reason I write this is I am wondering if anyone has experienced the same symptoms as me? Can anyone suggest any other forms of investigations or specialists that are worth seeing because I am not sure where to go tk next? And lastly being in the UK I have looked at the possiblilitt of going private, simply because of the excruciatingly long waiting times between appointments currently with the NHS, it seems that the private healthcare insurance providers I have spoken to do not cover for existing symptoms even when those symptoms have not lead to a diagnoses which is also very frustrating, does anyone know of any providers that do provide cover?

Thanks for reading, i really did keep this as brief as possible, if anyone can help with any of my questions, please do not hesistate getting in contact.

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7 Replies

  • Posted

    You can try a vemp test. An ENT can do the test. It trst for muscle weekness in the neck. Also your c1 and c2 in the neck might not be alligned. Look up neck atlas issues for more
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    • Posted

      Is this something you had one? I'll certainly go back to my ENT and see if this can be done, i haven't heard of neck atlas issues, but i'll look into it, thanks for your response

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  • Posted

    I have been and still are spaced out for over 8 yrs. It's no fun. I have been to every doctor on the planet. I had my ENT do the VEMP test, not many of them offer it so you may need to call around. My left side did not do well on the test and my doctor thinks it's because of the muscles on that side. She said to go to P/T for it. The test is easy to do so don't worry if you were worried. I also had my Chiropractor take an x ray and it shows my C2 is not in place. From what I read that can cause this issue as well. Look up C2 neck dizzy on google do learn more. ALso look up SCM muscle issues, the SCM is in your neck as well. Hope we all get better soon.

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    • Posted

      I'll consult with my ENT see if this is something I could explore, i have had an MRI of my C Spine so I would have thought if my C2 is out of place, it would have come up in that, but I may wrong.

      I have looked into SCM issues but I am not sure what could have caused this to be such a sudden issue and don't really know any effective ways to strengthen the SCM, but I will look into this further also, I think I have an infection in my left ear, which may be causing issues so I need a follow up on this as well.

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  • Posted

    I have MAV, at occasional BPPV.  I also have a bulging neck disc which an orthopaedic surgeon told me would create problems for me in the future.  I think it worsens balance problems having bulging discs in the spine or neck but as I also have them in my lower spine it may be that you have something else going on.  Hope your results come back okay.
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    • Posted

      MAV is Migraine Associated Vertigo. You can be aware of migraine or not as with silent migraines where you get the aura of a migraine without the headache.  I have silent migraines. 

      I had a neck x ray years ago due to back pain, this was before MRI became more common,  and more recently an MRI to see if my vertigo was being caused by anything more serious like an acoustic neuroma.  Thankfully all the MRI head/neck scan picked up was my bulging neck disc.  When my neck pain worsens so do my balance problems.  I  think I have more than one condition. all interconnected,  that may be affecting my balance but MAV was probably affecting me the most as I didn't realise I was having silent migraines which were affecting my balance and vision.  I thought this was due to having had BPPV, crystals disloged in my left ear which caused severe dizziness when I rolled over in bed or moved my head.

      ?It is like looking for a needle in a haystack sometimes trying to pin point the exact cause, and sometimes there may be more than one cause.  Hope this helps.

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