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Seeking advice

Hi everybody,

I am desperately seeking advice and this site was recommended to me by my gp, I apologise for the long post I will try to keep to the point. About 15 months ago started to get neck pain and fatigue this progresses to numbness and tingling all ignored by myself then I started getting dizzy spells and blacked out twice this made me go to gp saw a lovely Doctor who felt I needed referring to cardiac team because of the black outs, and due to family history of brain tumours was also sent for mri, then I started to walk really strange lifting my right foot too high and getting severe pain in thumb, upper arm and big toe saw another gp who urgently referred me to neuro whilst waiting the many weeks I started to develop spasms, tremors, confusion, my bladder and speech also affected finally saw neuro who disregarded all my symptoms said mri was fine and I was suffering from silent migraines and s mall fibre neuropathy due to reduced sensation in limbs was also given full blood test and referred for glucose tolerance test and SSEP and VEP, this was back in July follow up appointment in December neuro did not even look at me he asked how I was and I said really not good to which he replied your b12 is low, gave me a scrap of paper with commence b12 injections and told me to take to my gp. I saw my gp who was really disappointed with this and says after I have my b12 levels checked (due to do it this week) if symptoms have not improved he will send me for second opinion, well I have not noticed any change and my brain and speech is incredibly muddled I have lost all sense of perception and constantly feel like my skin is crawling am I just going crazy?? by the way the neuro put me on gabpentin and all my cardiac tests have come back fine, had my SSEP and VEP early this month no results yet. I know all these symptoms don’t point to just ms and it could be many other conditions, but it am very frustrated at my treatment from the neurologist and wondered if this was normal practice also I am worried about being referred for a second opinion, I don’t want to be labelled a time waster!! Really sorry for the long post but this site is so friendly and informative I was hoping somebody might have advice, reassurance or something to make me smile.

thank you

Hello Bitfedup,

Don’t give up, see your gp and ask for a second opinion from a different consultant. You know you have these problems and want an answer. Many times I was told it was all in my mind, now been Dx with SPMS so don’t just roll over fight for a Dx whatever it may be. I wish you good luck.

Janet

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Hi Janet,

thank you so much, I do really feel like just giving up and your right I have thought many a time I am imagining all these strange going ons. I use to run 5 miles 4 times a week cycle 16 miles 3 times a week, walk the dogs twice a day all while working 28 hours a week, raising my 3 not so little children, now it’s a good day if the dogs got 2 very little walks a day, the tension on the dogs lead helps with my balance?. The other day my back went into a spasm which lasted for 2 days. I think the nerve pain and staggering around is the worst !! .

i cannot believe how positive and patient everybody seems on here, it really helps to make me believe I will see light at the end of a very long and lonely tunnel.

Many thanks

sally

Hi Sally,

All the time you come on this forum you will never be alone as most of us have experienced what you are now going through. You will see the end of the dark tunnel but unfortunately Doctors and Neuro’s have no idea how it feels to be in your/ other people’s place. Don’t give up hope and remember we are here if you need to rant and say what you feel. We understand.

Janet

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Sometimes you have to be your own best friend and advocate. In other words get pushy - in a polite way of course!

Go back to your GP, have a frank discussion and make a decision re where you go from there.

I will add you may be able to see a consultant from a different trust. My understanding is you are not restricted to where you live but practicalities need to be considered e.g getting there.

I have changed trusts / consultants more than once.

Hi humbug,

thanks for the reply I must stress my gp has been more than supportive, he rings me weekly to check how I am and he is the one pushing for a second opinion. However I know from experience how a second opinion can ruffle a few feathers so to speak! And I really hate to cause a fuss, I am a very positive person and believe if I view my glass as half full it always shall be… Just it can be lonely having that glass on your own I know my body and Its capabilities and functions and I know it is no longer performing how it was or can.

it never ceases to amaze next the amount of positive people on this site and no matter what they just keep on living very inspiring !!

Many thanks

sally