Very concerned, strange symptoms : I've been... - Pain Concern

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Very concerned, strange symptoms

Kayley12345 profile image
11 Replies

I've been unwell for about 3 months, showing all sorts of symptoms as many things such as Guillain–Barré syndrome, which I'm very concerned about, the doctors said at first that I had viral infection and now I'm worried it's leading into GBS as I've developed symptoms such,

Loud Ringing/static in the ears

Pins and needles in my feet and hands

Weakness in arms

Muscle twitching

Neck shoulder and back pain

The muscles in my neck judder when I'm moving about

Pain and pressure in head and face

Right cramping in right hand

Strong mirganies

I'm only 21 and I'm having such strange symptoms I've never had in my life and I'm at a loss what to do

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Kayley12345 profile image
Kayley12345
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11 Replies
hypercat54 profile image
hypercat54

Hi you need to go back to the doctor and tell them every symptom you have, when it developed, how often you get it and how severe it is.

Please don't ask Dr. Google as you will go from a headache to dead in 3 clicks!

I have been getting some strange symptoms myself over the last couple of months and finally went to the doctor certain that they wouldn't take me seriously. Well the lovely doctor did and she ordered thyroid test, diabetes, vitamins etc. One has come back. I have borderline under active thyroid which they are going to retest in 3 months.

Make yourself that appointment. x

Kayley. There is a huge range of presentation and symptoms with Guillain-Barre Syndrome. Medical personnel know the name but few have direct knowledge of the illness a handful of cases will not prepare them. Also many other serious and less serious causes start similarly. I have GBS and am left with severe residual problems So please don’t let them blowoff or poopoo your concerns. And if you have ANY breathing issues go to the Emergency Room immediately. Further the GBS/CIDP foundation international in US has the best info and forums regarding theses illnesses. Take Care DB

Kayley12345 profile image
Kayley12345 in reply to

Hi thank you for your reply, the doctors are just staying that its temporary after an viral infection and it will go back to normal, I'm sure it's something more serious, when I move wrist, my whole arm will judder, is this something you had?

Kayley12345 profile image
Kayley12345 in reply toKayley12345

Also just to ask, did you suffer from tinnitus?

I am not sure what jutter means sorry. Mine began with full body muscle cramps or spasms Very severe. I still have the spasm issue. I had mild tinnitus before but since Is maddeningly loud. My onset was exceptionally fast but some take a month plus.

in reply to

A neurologist can do a spinal tap to confirm or eleminate GBS further a nerve conduction study also helps with diagnosis. You range of symptoms could possibly indicate several issues But only an experienced neurologist can sort it out.

Kayley12345 profile image
Kayley12345 in reply to

Thank you for your reply, I've had my symptoms for about 2 to 3 months, so if it was GBS wouldn't it of taken full affect my now? And also just to ask, do you mean you had tinnitus started before your GBS or after? Thanks

It is not my intention to push a GBs diagnosis in any way. My worry for you is that you describe symptoms that ‘could’ have a neurological cause. CIDP and GBS among them. If your doctor has your confidence great If not. And especially if the symptoms are worsening then pursue a well experienced specialist that can deal with whatever is going on. Btw my hands shake or tremble when I write use an iPad or guesture. Tinnitus is much much worse than before. And so you know I am four years and six long months since onset. And am severely disabled as a result.

cmoon profile image
cmoon

Kaley. DO NOT DELAY!

Everything Bar2 says could be very relevant to your problem. Absolutely insist that you are seen by an experienced neurologist who has dealt with this problem before. As Bar2 says, you will need blood tests and a spinal tap at the very least.

My best friend of 50 years plus had symptoms of GBS two months before he was diagnosed but by this time he had been in a deep coma for over a month. The GBS started slowley with mild symptoms of flu like origin for three weeks and got worse to the point of losing all control over normal bodily functions. After the third week he was admitted to Poole hospital in Dorset UK and got steadilly worse until going into a coma. He got worse still and was put on a ventilator to breath for him. Nobody had a clue! He 'died' four times while I was with him & not a single soul gave him any chance of recovery. All his friends and family were on a twenty four hour watch and chasing down every specialist we could find, just to get an opinion.

Then, one day someone came up with an idea to test for GBS which proved to be positive. He was immediately given blood plasma round the clock and five weeks after being admitted, he woke up, my best friend (Jerry) was back in the world of the living, or so I thought. He was paralysed from the waist down and would spend the rest of his life in a wheelchair, but at least Jerry was with us again. Jerry was in his early fourties, was the kindest, gentlist, most humble and the funniest man I ever knew, or even ever heard of.

Jerry & I used to play in a rock & roll band and we continued to play guitars together (we were great at Pink Floyd and Deep Purple covers) for another four years. Work took me away from Poole but I so much looked forward to seeing him whenever I could. Then he became a little bit quiet and we would speak on the phone but he always seemed to be 'busy' and ruled out any visiting him. He went very quiet.........Until I had a call from his sister telling me he had bowel cancer and that he was close to death. He had kept this quiet, (he never wore his heart on his sleeve and never ever bothered people with his problems) because he didn't want to worry us. I rushed to his bedside and found him looking very ill but still with a sense of humor. I had no idea he had cancer the past year or so, none. He had no pain of course being paralysed after catching GBS. He gave me his front door key and asked if I could check on his house and pop in the next day before I had to leave for home.

My wife and I settled down in his house for the night with me looking forward to seeing him in the morning. Three hours later we got the call from the hospital that he had died. I was then and still am today, totally gutted, four years later.

I'm sorry about rambling on Kayley, but the moral of my story is, as I said.......Do not wait!

As an aside, the week after he was diagnosed with GBS in the hospital, a lady was admitted with nasty flu like symptoms. In the ICU where she was brought, lay my friend, in a coma and very near death. She was diagnosed and made a full recovery because they caught it early.

The NHS is crumbling Kaley, so if you want domething done, get the info yourself, then go to your Doctor with a plausible case. The NHS is fine if you have have a black & white case as in say, a broken leg that they can see, but if it's a grey area like yours could be, they don't have the resources to spend the time diagnosing things. I know this, my wife is a nurse.

Again sorry about the long story (I've never really told anyone the whole story before and it is very hard to tell it now). Don't let it happen to you is what I am saying.

Kind regards

Simon.

AndrewT profile image
AndrewT

I'm NOT an expert, on your condition, but please DO listen to Simon! You are also right NOT to trust ONLY Dr Google. Yes Google is helpful, as a TOOL (only) and fine if you need a new bath....perhaps not so good if you are seriously ill!

In a different context, and some years ago now, an acquaintance of mine had convinced herself that she was 'Very Ill'. This was from reading ONLY Google- her actual condition, discovered by visiting REAL Doctors was far less serious. I have to tell you that she made a full recovery (except perhaps for a touch of incontinence).

Please understand that we are NOT having a 'go', at you Kayley, we ARE however concerned for your 'Wellbeing'. I hope that you can understand where we are all 'coming from', in this respect. Once again sorry if we all sound harsh, we really do, care honestly.

I leave you with my Warmest Wishes and a Prayer, that you soon feel better.

AndrewT

Jayjay46today profile image
Jayjay46today

U sure Ur not taking or coming off pregablin?

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