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Wondering if I might have MS, feeling lost...

Posted , 6 users are following.

ali45447
ali45447

Was diagnosed with fibromyaglia several years ago but never had an MRI to rule out MS.

In the past few months I've been having numbness, tingling and pins and needles in my arms and legs from no apparent cause (had bloods all normal) a weak feeling in my legs, tremors in my hands and in my legs. I also get random shooting pains around my body and itchiness which tends to pass quickly enough but is very irritating!

I feel unsteady on my feet and less coordinated than normal and in the past month or so as these symptoms have been bad (they come and go every few months with relative normality between) I have been experiencing overwhelming fatigue and change in bowel function (had some bleeding and was seeing a doc for gastritis or GI bleeding that has since stopped). 

Whenever I see a doctor they tell me it must just be fibro...

I feel like I'm going crazy. I can't function properly. My family are frustrated because I'm always tired and feeling sick, but they dismiss my concerns of MS as far fetched.

I don't know what to do...I recently heard one of my old doc's wife has been diagnosed with MS so thought of trying him in the hope he might understand how hard all this is...

Any advice, feedback, anything? I don't know...I'm so unsure of myself especially as so many symptoms can be caused by fibro anyway... I'm worn out trying to cope when it feels like my body is failing me...

3 likes, 17 replies

17 Replies

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  • patricia48825
    patricia48825 ali45447

    Posted

    This could be fibro, or MS, or a number of other diseases.  You need to know so that you can cope with the symptoms as it is the not knowing that must be so frustrating and worrying.  Ask your GP for a brain MRI and possibly lumbar puncture test and other tests to confirm MS or rule out MS and other autoimmune diseases.  I think it would be best if you ask your GP for a referral to a Consultant Neurologist who would be the best person to request all of the above tests.  You could always see a Consultant Neurologist privately and request MRI etc be done on the NHS.  I know people who have done this and gone on to the NHS waiting list at the top.  Worth a try.

    Good luck.

  • ali45447
    ali45447

    Posted

    Thank you for your reply. I'm not actually in the UK I just came across this site when I was looking for support!

    I had an appointment with GP today. He said he doesn't think it's MS because he said that if it was then the numbness, tingling etc should only be on one side or in one area and would not be in all my extremeties. Any comment on that? I never came across anything stating that in my own searches online. I'm obviously not comparing my Googling to a medical degree but still find it curious I never came across that information.

    Anyway he has referred me to a neuro to check out the symptoms and has drawn fresh bloods to check them again.

    Still feel like I'm losing my mind though... 

    • caroline66389
      caroline66389 ali45447

      Posted

      Hello! I was wondering how you are getting on? My neuro told me the same re symptoms being specific to an area and not randomly all over the body!
  • jordisonforbes
    jordisonforbes ali45447

    Posted

    I think you should appeal to your docter by saying, ok I know you feel it is the fib.... but this is causing me so much stress and anxiety, please could you send me to a neurologist to check it out.
  • sarah19707
    sarah19707 ali45447

    Posted

    Hi Ali,

    you have all the symptoms that I do and I was diagnosed with MS in April, I would demand an MRI, is there any news with you? 

    Sarah

    • caroline66389
      caroline66389 sarah19707

      Posted

      Hi Sarah

      Could you go through your symptoms please? I've had really strange ones that first appeared last year and have reappeared now. I saw a neurologist who said it was stress!

  • sarah19707
    sarah19707 ali45447

    Posted

    Well it's pins and needles everywhere or anywhere, burning sensation anywhere, nausea, headaches, itching, blurred vision, difficulty in swallowing, weakness and vibration in the legs, constipation or loose bowels, stomach cramps, dizziness, poor memory and concentration, just to name what I remember off the top of my head and this is all daily for me, I've had symptoms 20 years now, does this help? 

    Sarah

  • sarah19707
    sarah19707 ali45447

    Posted

    Sorry I forgot the worse one is fatigue! 
    • sarah19707
      sarah19707 jem73048

      Posted

      Hi Jem,

      i was referred to a new neurologist as the initial one I saw said he could not treat me as he wasn't an MS specialist so my appointment is not till next month! Meanwhile my life is on hold and I'm unable to work due to the fatigue, I have my own mobile hairdressing business and if they can't treat the fatigue I won't be able to carry on in hairdressing? It's frustrating, by the time I see my neurologist it will be 5 months since I was hospitalised! It's a joke.

      Sarah

    • jem73048
      jem73048 sarah19707

      Posted

      Hello Sarah, I wrestled with fatigue for half a decade.

      Modafinil rescued me.

      What country are you in?

    • jem73048
      jem73048 sarah19707

      Posted

      I too am in England.  

      London.

      For me, Sarah, fatigue was the easiest thing to treat.

      Getting hold of Modafinil, however, was not.

    • sarah19707
      sarah19707 jem73048

      Posted

      Il make a note if that, what's your MS story Jen?

      Sarah😊

  • sarah19707
    sarah19707 ali45447

    Posted

    And, sorry my memory is terrible! Anxiety and feeling like something bad is going to happen, awful and weird 
    • caroline66389
      caroline66389 sarah19707

      Posted

      Yes I have a lot of that but not all at the same time thank God! Eg today it's been numb like legs along with pains in my arms with the occasional bit of prickling sensation...
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