I feel like I've been thrown a curve ball !

Posted , 6 users are following.

Hi all I went to see a Neurologist last week. I've been experiencing a few worrying symptoms like shaking losing my train of thought in the middle of a sentence, muscle spasms, vision problems to name a few. Anyway, I rolled into his office (I'm in a wheelchair by the way) and he was lovely he listened to me and kept looking me in the eye and only now and again writing things down. I was just expecting him to say not to worry and let's just do some test. But he  started talking about my already diagnosed back condition Spondylolisthesis ( yes it's a mouth full) my Fibromyalgia, IBS and said " Has anyone talked about Spina Biffida with you? Or MS?" My jaw could of hit the floor. Back three years ago I had an operation to stabilise my lower back they also found three stress fractures that couldn't be explained. I'm now being told Spina Biffida is a real possibility and that it would explain a lot so why am I so FREAKED OUT, I'm finding myself thinking is having SB better than having

MS ? but how on earth can I think that ? They are two different things! I'm not doing myself any favours, I start thinking one thing and I end up causing an avalanche in my mind and giving myself a migraine!  For  a long time now I've wanted someone to tell me what's wrong with me no matter what it is and now I'm scared 😥 I'm most definitely my own worse enemy! 

Im sorry I've ranted on a bit, but your the only people I know of that understands. My husband is great he looks after so well, but, I don't think he really gets it. I don't want to say this to him but I repeat myself so much when he asks me if I'm ok I don't want to shout yell and scream which how I feel inside. I just needed to rant a bit.

Thanks everyone for listening 

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9 Replies

  • Posted

    I have recently been diagnosed with fibrormyalia some days ar good but when it is a bad day my husband just don't listen and tells me to get a grip this makes me so bad and I can go deeper into myself. Then for days I keep thinking what he says which then I just want to curl up and hide away

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    • Posted

      I think I would smack him really. This is the time when a understanding & sipporting spouse is important to the wellbeing of your health physically & mentally.

      seek a support group in your area and drag him along to listen how painful fibro is. Overactive nerves relaying pain to our brains is not something you can just get a grip. 

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    • Posted

      I truely agree with u I have my good and bad days, but it has been a horrible experience so with having fibrorormyalgia so i'm in pain all the time my question is though does it also make your muscles hurt real bad as well!!! I was just dignosed with this 1 year ago so i'm still learning about this and my factor 5 so i would appreciate the input!!

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  • Posted

    You have a lot on your plate. A doctor just left you in the lurch without further testing. Just rattled off what he is considering for his own thoughts should have kept them to himself until he had more diagnostic feedback.

    i am sorry that this happened to you. It's totally unprofessional. To just lay those words out there can definately create a lot o unnecessary stress just ruminating about something a doctor said.

    continue to search for more tests and never give up. It could be as simple as needing a complete physical to start the process to attain a management system to deal with a diagnosis.

    Rant and rave all you want to physical limitations can be very difficult to cope with any time.

    i have a bit of advice never give in always give a good fight for your health and be grateful for every day!

     This too will pass.

     

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  • Posted

    Morning Maley Bear;   I suppose the reply that I am going to give you may not be understandable/go down well with the other replies: however, there are many similar symptoms between MS and Fibro, and when I first starting having problems, the doctors all thought that I had MS too. It was only after having the last MRI, and a lumbar puncture that MS was ruled out.  Even one Neurologist said that "the fact that heat exacerbates my symtoms is very concerning, as this does  exacerbate MS"......so hence, if you havn't had an MRI/Lumbar Puncture, I feel that is why there is this question.  If there has been no definitive diagnosis between the two conditions, then perhaps they may wish to confirm with these/this  test, as the treatments for these two conditions are Very different.

    ?As to the SB, this can also be something that many of us have, without knowing so....(there are many stages of Spina Bifida..some severe and some not so).  My brother lived nearly 50+ years with a minor form, and it wasn't until he started seeking treatment for his "bad back from horse-riding", that x-rays/scans etc showed up a small degree of SB near his cocyx.  It does not involve major nerves etc, but he has learn't to cope with the back pain etc, as he now knows the cause, and the causitives....he no longer horse-rides/musters the cattle, but employs others to do this for him (actually has progressed to doing this work via an Helicopter which saves much time and money in the long run)....so a good result there...lol.

    ?Just take each day as the next one comes , and the sooner you can get the positive diagnosis the better, for treatment wise.   As to the getting understanding of Fibro from others, I found on Face-book (via the ME society in America), a very good scan result for someone who has Fibro (a depicted picture of what our body looks like under the layers of skin).  This pic I showed to members of my family ( and only in the last month or so, too, after nearly 20+ years of having same)....and it really has helped my husband and children to "see the Picture of pain and it's pathways"....it looked like having been in a Major accident, with the bruising effect, and the inflammed nerves...........very convincing.  Perhaps if you log into the ME/CFS website (I think it's something like "The Lost Millions", or something to that effect?? you maybe able to find the diagram.Also,

    ?Please know that this is a forum where many of us give a rant to our feelings/frustrations and finding new ideas/treatments for our symptoms.   Keep in contact, and we are here.                Bronwink

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  • Posted

    Hello, firstly my sin has sluba bifida and I have MS. You say spina bifida then get scared of MS, a diagnosis us just a conformation, you already gave symptoms, you probably don't have fibro some symptoms of that are like ms, spondylosis do da as I call it is progressive too, consider you're swapping these for slina bifida which you're born with, and MS which develops, you can manage MS with the right treatment and reduction of stress. It's not a death sentence. The only thing that's changed is you know what you have or haven't. Please don't panic that's not good and doesn't change anything. I wish you well and let us know your definitive diagnosis. Do stress relieving excercuses with breathing. don't take any sweetners and good Luck

    🌹🌈

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