Please help, so many symptoms and taking so long to diagnose

Posted , 6 users are following.

I was referred to a neurologist in August, as I have been getting tingling in hands, feet and sometimes face and extreme tiredness.  He suggest I could have fibromyalgia.He asked for MRI scan, sleep studies and nerve conduction studies. Since August I have had a period where I can hardly move, my body hurts so much, I am so exhausted, everything is an effort, I have sores on the roof of my mouth, and my fringe is falling out. My dr said I have flu, but I'm not so sure, I am in despair as being diagnosed is taking so long. Can anybody help me?

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6 Replies

  • Posted

    You really are in the wars!!! If its any help to you, this is the hard bit, before the diagnosis, before you have any meds to help and when you're in a physical state that makes coping so much harder. It does get easier, especially once you start trying out different medication, altho what works for one will not work for another necessarily so its trial and error.  It does sound like Fibro, but hes sent you for an MRI scan and nerve conduction to rule out MS and sleep studies to rule out sleep apnoea. So there are other possibilities as to what you may have, lupus being another one and i have seen other illnesses mentioned on here that would match your symptoms too. You may also have a combination of illnesses. It sounds like your GP is being proactive with all the tests at least, so altho they may take time, you will be getting closer to the truth with each one. Once you have a diagnosis you can start trying meds and again, youre another step closer to finding some relief from this , but I think once you know what you're up against you will feel a lot better anyway, feeling awful and having no idea what's wrong with you takes all your control away and once you know what it is, you have the control back and can start dealing. Diagnosis can be a long road that drags every step, but its necessary. In the meantime, unless you already are doing this, start with the basics, take vitamins, iron, echinaea, esp vitamins C and D, to make sure your body is in the best shape to fight, a short walk every day if you are up to it, if not make small goals every day (if its fibro, it feels terrible but it actually does no harm so you dont feel like doing things, but you physically can). Again if you are able, exclude lactose, gluten and sugar from your diet for a couple of weeks and see if you feel any better, reintroduce them one at a time if you do and see if you can pinpoint anything thats making you ill. Try to reduce anything thats causing you stress in your life. Im not for a second suggesting that any of this will "cure" you, just leave you in the best position to cope/combat illness and any little change that helps even a bit will make you feel better. I wish you the very best and hope you feel better soon, sending you mendy vibes xxxx
  • Posted

    Hello luisa,

    What you describe sounds very much like an infection or an allergic reaction.

    Have you checked your temperature? You sound as though you are run down

    Has your doc given you antibiotics?

    How is your anti-oxidant intake? Vitamin C, E and grapeseed extract may help but check with your doc first in case there is a clash between the medication and the vitamins.

    Hoping for the best for you,

    BJ

    • Posted

      Brenda

      Have had all the usuals done at the docs, temp, pulse etc is fine. Blood pressure is low 110/78, he gave me naproxen which is helping with the pain a little. It does feel like exhaustion though.

  • Posted

    I went 10 long years with what I believed to be a SLUGGISH thyroid in spite of the docs lab numbers.....

    There are 66 some symptoms of a low thyroid and one needs to work HARD to get to theat root.....

    Once I got on Armour thyroid in 2002, 10 yrs of depression misery lifted...

    And I believe IF I had gotton on thyroid support before 1999 when FM hit me, I may not have gotten hit so hard....

    Research HypoT symptoms as it sounds like you have SOME....

  • Posted

    Do a search on google: Fibro and Thyroid

    You'll find plenty of info on this connection.

  • Posted

    have you been tested for lupus? 

    A friend of mine was recently diagnosed and what you're going through sounds familiar. If your Dr hasn't already I'd ask to be tested, if it's not at least it's another thing ruled out. 

    Sending gentle hugs xxxx

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