14 months of tingling in body, strange feeling in head etc.

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Hello,

  • Male

    33 Years old

14 months ago I started to get this tingling feeling in my left leg and arm. It was good one week, bad one week, good one week... Until it slowly became more or less permanent. Now its mainly in my hands and legs, and feets.

I also feel quite weak in body body, more. often than rarely. And balance is not great.

Together with this I also have a strange vauge feeling of being constantly dizzy, like a brain fog. Struggle to concentrate. I feel unfocused and out of place.

I also get muscle spasms all over my body randomly, but not simultaneously.

Sometimes i get super sensitive on certain areas of my body, and after a while it just dissapears.

It feels like I always have dirt in my right eye, its it often looks red.

In general I feel super strange and weird, it is very difficult to explain - but the symptoms are always there.

I done all blood tests possible, aswell as a MRI brain scan - and everything looks good.

All the doctors, aswell as neurologists say it is due to anxiety - but I find that hard to belive, since I have a life I am very satisfied with - and all these symptoms came out of nowhere.

Anyone that recognise themselves in this?

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  • Posted

    hi there ,ive had tingling in my body for 36 months none stop toes to knees both hands i have it none stop not a second without it since it came on overnight ,i too have had every test there is all normal yet its continued for 3 years ,i also have the muscle twitches and brain fog ,i know of many others with the same ,most are diagnosed myself included with small fibre neuropathy for which most drs know absolutely nothing about and your just left to live a miserable existence with tingling everyday ,you get help for every illness but not this and drs just blame good old anxiety on everything

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    • Posted

      @dawn68509

      Wow, okay - that sounds very intense, and I feel like I am on the same path as you.

      Seeing neurologist again tomorrow, and will bring that up and see what he says.

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  • Posted

    Prior to this starting were your prescribed and medications during the previous year ?

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    • Posted

      @derek76

      Hey, no - this just happened from nowhere, over night, 14 months ago. Suddenly started to get these strange symptoms - and it has been bothering me alot.

      I could probably get over the tingling feeling, but the brainfog and strange feeling in my head/mind is very draining.

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    • Posted

      Wow... Checked online now on my history at the doctors. Guess which antibiotics I was given 2 months prior to these symptoms started? Cipro...

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    • Posted

      infection prior to hear surgery. My fist visit to my GP after getting home was to ask how I could have got tendon pain after laying around for eight days. I had physio that helped it and twice later was prescribed and stopped it after two days due to tendonitis then the penny dropped.

      All was well until I was later prescribed BisoprThat was why I aske the initial question. In my case I was given it in hospital when I had a prostateolol and Clarithromycn that somehow each triggered the dormant problem. Suddenly overnight I had a form of neuropathy in my lower left leg. The one that had earlier had the tendonitis. Other symptoms followed but not as bad as yours.

      Your doctor will of course deny the link but since the EMA (European medical association) conference last year some restrictions have been placed on subscribing.

      Have look at the web site Floxie Hope and this earlier link to Cipro put up by the moderator.

      https://patient.info/forums/discuss/fluoroquinolone-toxicity-syndrome-427305

      I will highlight your post to Miriam who is our expert and did a presentation to the EMA conference that you can find links to on floxie hope

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  • Posted

    Hi Peter,

    Derek alerted me to this thread and kindly called me an "expert"! I'm not an expert by any means but have been researching the effect fluroquinolone antibiotics can have on people as most doctors are simply not told about the delayed and long lasting adverse reactions that they can trigger. This is why they just say it's "anxiety" - or CFS or, with tendon and muscle pain they say Fibromyalgia - all conditions which actually need no cause or explanation.

    The cipro you found took 2 months prior to the tingling started has been shown to cause damage and mayhem, to one degree or another, in all of your cells. The adverse reactions any patient experiences depends very much on which types of cell are worse affected along with personal factors such as their age, fitness, lifestyle and previous exposure to toxins such as environmental pollution or certain pharamceutical drugs (not just the fluoroquinolones by any means).

    From your description it sounds like your nerve sheaths have been the main target which is causing the tingling, weakness, balance and brain problems such as dizzyness and brain fog. This will also explain the sensations in your eye as well as the occasional spasms of the muscles and also feeling super sensitive.

    Doctors are of the opinion that nothing can cause all these and the rest of the long list of known adverse reactions but if they study how these antibiotics behave once they're inside the body it becomes obvious. The target of an antibiotic is of course the bacteria that are causing whatever problem. The fluoroquinolones (FQS) seek the bacteria and get inside and interfere with the bacterial DNA, meaning the individual bacterium can't replicate (which they do at an alarming rate) and so the infection stops. Good.

    BUT - when the FQs were synthetically created to do this exact job no one really took on board at the time that each of our cells contain hundreds or thousands of bacterial-type micro-organisms called mitochondria. These use the nutrients from our food and convert it into energy - they're our batteries, if you like. The FQs (and other drugs and toxins) can damage our mitochondria over time causing symptoms ranging from simple ageing to degeneration and disease. FQs however are a bit special because they also do the job they were created for which is to interfere with bacterial DNA - which happens to be very similar to mitochondrial DNA. Thus they give us the double whammy of damaging our mitochondria AND preventing them from replicating. Not only that but they've also been shown to cause oxidative stress (which is the main reason why smoking is bad for us).

    The EMA review that Derek mentioned resulted in all healthcare professionals across Europe being alerted to the dangers - so long as they read the alerts of course (they get hundreds every month). Some restrictions were imposed on what FQs could be prescribed for and patients are supposed to be told to stop taking the Cipro or whatever (there are 4 other names) as soon as they get any sign of pain.

    It looks like you were give the Cipro about September 2018? This was just about when the review was closing and the alerts weren't issued until March this year. This means doctors should be more aware of what can happen but they are not looking back at problems that started over a year ago. By the way, anxiety is also a symptom but it is not the cause of your problems.

    You asked Derek if there's a cure but, as you've probably guessed, the answer is no - only time and rest. The theory that good nutrition can help your mitochondria to recover is becoming popular as this also ties in with recovery from Fibro, CFS and possibly MS and other degenerative diseases. The idea that further pharmaceuticals will help is popular with doctors but it's possible that yet more drugs might temporarily damp down symptoms but will very likely make things worse (as many patients have found) either by causing addiction or more damage.

    For ideas, look for mitochondrial nutrition or something like 'mitochondria not hypochondria' is very good. In the short term avoid sugar, junk food (preservatives and additives) and alcohol. Don't take Ibuprofen and other NSAIDs and steroids (these can make FQ symptoms worse) - paracetamol is generally ok for pain if you need it. Multiminerals and antioxidants are very useful.

    This is too long but I hope its given you an idea of what has happened to you. There is no quick fix but hopefully things will start to get better. Derek mentioned 5 years and still got problems which isn't unusual (especially in someone older and wiser!) but for many the worst seems to be over after 18-24 months. It could take a while yet for you as you might need to start doing some of the things I've mentioned above but keeping positive is an important past of the recovery process so please don't be despondent about all this. Find out what you can about it - I can't give links but you can message me if you get stuck.

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