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Fibro Clinic Guys Hospital

Posted , 6 users are following.

Maggers
Maggers

Has anyone attended this Clinic and if so did it help?     Are there any other fibro specific clinics around. Although I have a good GP think I am in need of a little more than he can offer.     Have come to the conclusion I need specialist input if I am to convince my unsympathetic employer that this condition actually exists. She couldn't give a damn and is using all sorts of tactics, in what I believe is an attempt to get me to leave.

 

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  • pollmadoll64
    pollmadoll64 Maggers

    Posted

    I have just started juicing ginger, carrot, grapes ,apples ,beetroot and put some boabab powder in to it . Also I take dissolvable magnesium phosphate   Salts.
  • pollmadoll64
    pollmadoll64 Maggers

    Posted

    It took over four years for a diagnosis and after wrongly wasting my time seeing neurologists and being offered a lumbar puncture!! Luckily I changed doctors and was referred to a rheumatologist. Eleven years of Fibromyalgia now as a single mother!
    • Maggers
      Maggers pollmadoll64

      Posted

      Gosh you were lucky took from 1987 to 2014 to get my diagnosis!!!

      Thought I was going stark raving bonkers.  It's about time doctors took us seriously don't you think.

    • Sare145
      Sare145 pollmadoll64

      Posted

      Hi , I'm doing a bit of research into how people got diagnosed.

      My Rheumatologist said she doesn't think I have fibro, I don't have entirely tender points.

      Is that how you got diagnosed?

      Can I ask what symptoms you had ?

      I'm getting ready frustrated with the Drs who can't explain what's wrong with me !

      thanks x

    • Maggers
      Maggers Sare145

      Posted

      Checking tender points apparently is old fashioned and not the way it is done now.   Took from 1987 to 2014 for my diagnosis.  Firstly presented with pins and needles in hands and upper arms. Had carpal tunnel surgery, didn't improve then balance problems then added in IBS, burning skin, facial rashes.  I have osteoarthritis too so all pain was put down to that! migraines, twitches, internal tremours, nausea you name it presented itself.  It is frustrating and I can understand exactly how you feel.

    • Sare145
      Sare145 Maggers

      Posted

      Thanks, I did think that the tender point assessment is out of date but she's done it every time I see her!

      I've got pain in my hands and feet, I occasionally get slight pins and needles in my feet too.

      The occasional muscle twitch and internal tremors ( worse since I started escitalopram)

      insomnia, anxiety and depression came later.

      Does this sound like fibro to you?

      I keep being told it's anxiety!

    • Maggers
      Maggers Sare145

      Posted

      I did reply but think it failed to post so here goes again.

      I am not a doctor but if you are worried about symptoms then of course you are going to be anxious - bit chicken and egg really.  Insomnia is perhaps my worst symptom and is so much a part of my life that I forget to mention it. I am writing this at 3a.m. so that just proves it!!  I don't know what pains are osteoarthritis and which are fibro - doesn't really matter because whichever one is causing it - it hurts!  I did read somewhere that they are now saying that mri brain scans are showing evidence - of what I can't remember - now that is fibro I keep forgetting thingslol   I just hope they get a definitive test soon because at present we are just in the hands of the rheumatologists to decide which label to give us and then discharge us back to the GPs.    Do hope you get some answers soon.

  • kiki74
    kiki74 Maggers

    Posted

    There is now a blood test but insurance does not cover it. Costs 7-800. Used to cause thousands. It is not wide practice to do so. Majority of the medical society still do the pressure test which is unreliable.
    • Maggers
      Maggers kiki74

      Posted

      Interesting - do you know exactly what they are looking for in the blood test?    I have had loads of blood tests and all it brings up is low vit D and weakly positive ANA.
    • kiki74
      kiki74 Maggers

      Posted

      It's the FM/a test. It tests multi Bismark erst and analyzes the immune system white blood chemokine and cytokine patterns.cytokine levels stimulated pbmc are lower in fibro patients.

      I have not had the test. It is new but showing a 93% successful diagnosis and may get approval from insurance companies soon.

      If what i read is true, this will be a major breakthrough. Finally proof of what we have!

    • Maggers
      Maggers kiki74

      Posted

      We will all await the final proof and celebrate!  Perhaps then we will be taken a bit more seriously.  My employer still thinks it doesn't exist!

    • kiki74
      kiki74 Maggers

      Posted

      I will keep you posted. The lab has been working on it for years. It used to be too costly and didn't have enough studies but seems they have making great strides. One of the insurance companies that covers medicaid and Medicare here in the states is looking to reimburse for the test stating that it is cheaper than running so many tests for exclusion.

    • Sare145
      Sare145 kiki74

      Posted

      That sounds promising,don't know if we'd be able to get it done in the Uk

      . Please do keep us posted, my Rheumatologist says I don't have it but I'm convinced I do , she's put all my symptoms down to anxiety.. Don't know how anxiety can make my hands and feet really painful:-(

    • Maggers
      Maggers Sare145

      Posted

      Poor you - so easy for doctors to say anxiety because it doesn't warrant further investigation.  I started seeing rheumatology department years and years ago.  They just fobbed me off with follow up appointments 12 months later. Never saw the same person twice. Locum diagnosed me in 1 minute flat, wrote "fibromyalgia" on a scrap of paper and said "go research it, we don't treat it in this hospital, I'm discharging you back to GP".   I had never heard of fibro, hadn't a clue whether it was serious or not and found myself crying in the hospital car park.   Mine started with pins and needles back in 1987 and I had needless surgery for carpal tunnel obviously it didn't cure it.

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