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Long shot but is it worth looking into?

Posted , 3 users are following.

anni_04141
anni_04141

Hi all 

I know this is a long shot but at my wits end to what is going on and after researching the Internet and looking at MS I'm thinking could this be a possibility? 

 I am 26 year old female. My problems began three years ago.  I saw a rheumatologist initially and was diagnoised with sero negative inflammorty arthritis. After an ultrascan revealed erosions. I had problems with immune suppressants and ended up going to a different hospital. After seeing the consultant twice and having another ultra scan it was decided I did not have arthritis but fibromyalgia. 

I decided to seek a third opinion due to conflicting diagnoises and this is the rheumatologist I am under at present. My blood work is normal ( I have been on steriods for three years for asthma problems) my ultrascan of my hands shows mild synovitis but no active inflammation and some swallon joints. I feel the big fibromyalgia fob off is coming. Even though my consultant states my symptoms don't fit with it. As I have swelling and fibromyalgia is meant to be an invisible illness. 

I have never been tested for MS or it mentioned by a doctor before. I am now thinking this should be ruled out. My symptoms are as follows

swelling - hands, fingers, toes, neck and knees 

extreme pain/ joint pain 

numbness/ tingling pins and needles. Numbness down left side of face. My buttox will go numb when sitting. 

Jaw pain 

hot flushes 

brain fog 

trouble getting out what I want to say even though the words are there. 

Previous pinched nerve in neck had pains behind my eye and left side of face and head. Lasted three weeks. 

Dizziness 

off balance and loosing my footing 

pains in legs 

stifness and weakness 

fatigue 

increased pain on movement 

headaches 

anxiety

hand and leg shaking

would appreciate any advise and if I should mention it to my consultant to be tested? 

Many thanks 

 

0 likes, 5 replies

5 Replies

  • jaredboy
    jaredboy anni_04141

    Posted

    I'm certainly no doctor, but it wouldnt hurt to go to a neuro and get a MRI.

    My diagnosis started with a numb tongue/lower face (as if I had went to the dentist and novacaine was wearing off) and the MRI showed all little white dots and the rest is history.

    I havent gone for a spinal tap which is apparently the most complete way to diagnose so i would recommend you go for the MRI as it can't really hurt you?

    • anni_04141
      anni_04141 jaredboy

      Posted

      Thank you for your reply. I know it's a long shot and most likely isn't MS but I agree it dose the hurt to rule it out. I will speak to my consultant about it when I see him In Jan. Thank you for your advice. 

  • jo83602
    jo83602 anni_04141

    Posted

    Hi

    Im in same situation as yourself and have got a list of symptoms as long as your arm that include the ones you have, I was diagnosed with fibromyalgia two years ago and like you have asked my neurologist to consider looking into MS due to some of my symptoms...he has advised that fibromyalgia does have the characteristics of MS but is a completely different disease that's why a lot of people think they have MS. He is however going to do a lumbar puncture to rule it out for my peace of mind. Fibromyalgia is a dreadful disease and a lot of people don't understand how much it affects your day to day life.....I do hope you get some answers as being in limbo doesn't help and causes anxiety to be worse. Good luck

    • anni_04141
      anni_04141 jo83602

      Posted

      Thank you, can I ask do you have swelling? The thing I don't understand is swelling isn't part of fibro so I'm really struggling to accept the diagnoises. Hence why I am looking further. I have found that fibro isn't taken seriously my GP even told round to me and said its not a disease it's a group of symtoms. It's not understood and there is no care out there for people struggling with it. I really need to rule everything out in my head before I say ok yes it is. I feel doctors diagnoise it too quickly and it's an easy get out clause for them when they can't be bothered to investigate further. Because there is no real test for it they can get away with it if nothing else is clear; I am so fed up with doctors/ NHS. I feel I'm fighting all the time against them to listen and not getting any closer to a clear explanation of what is going on yet my life is just on hold. I hope you get some answers too. 

    • jo83602
      jo83602 anni_04141

      Posted

      I understand how your feeling that's why I want a lumbar puncture as I feel that I have been given the run around for years. You sound like you haven't got an understanding dr or rheumatologist...mine are great and there is lots of help and medication for fibromyalgia...it is now recognised as a disease and taken seriously if you have right medical help. The neurologist however...well not found a good one yet they don't seem to want to give you the time of day. Please make sure you ask for MS tests as your worried. I only have swelling in my right fingers but that is due to arthritis...fibromyalgia, arthritis, lupus, MS are all connected so I've been told. It is a long road full of tests and trying different meds to see what works for you. Please stay in touch x

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