Seeing neurologist later and desperate for advice please

Hi there,this is my first post since registering and I'm really nervous but desperate........ Long story short, if possible, I go to see nuerologist later and don't know what to ask? I've been diagnosed with suffering chronic pain for many years now following a ruptured disc about 7 years ago, although suffered moderate to severe back pain for going on 20 years now. Im on OxyContin, diazepam, pregabalin along with other drugs for type 2 diabetes, depression and sleep medication for sleep paralysis. I also have dry eyes, double vision occasionally and was left with saddle anaesthesia following caudal epidural which comes and goes, comes more than goes. I want to rip my skin off most days through itching, which I know can be caused by meds. I sweat profusely, although not like body odour, more face and limbs, I have excess saliva for which I take lansoprazole, especially after eating which causes me to have the most irritating cough (the saliva not the lansoprazole). I also have an excessive thirst, constant dry mouth, my nose gets very sore inside and bleeds when blown, even gently, then will block completely so I can only breathe through one nostril sometimes and I get very sore, weepy patches on my scalp. Sorry I'm just rolling these out as they come to mind. I was diagnosed with possible rauynards syndrome years ago (think that's how to spell it) oh and I get cramp in my legs as well as what feels like cramp in my ribs. Following an opticians appt last year I was referred to neurology who did head, neck and spine MRI. It had been suggested, can't remember who by, but that it may be MS. However this was found not to be the case. The neurologist I saw last year said my meds could cause the symptoms I have that had resembled MS, but the reason I'm on the meds is because of the symptoms?! Confused? I am! Very, and am going to see neurologist this afternoon and don't know what I should be asking.

I don't want to be taken off the meds in the sense that they do help, even if they don't take the pain away completely and if these symptoms are side effects then how come I was put on the meds to treat the side effects I had before on the meds that are apparently causing them.......I'm driving myself mad with this vicious circle going round my head?!

If there is anyone out there who could spare a precious moment of your time if any of this sounds familiar or could suggest what I can ask I would be so very grateful, I'm on the verge of cancelling the appointment for fear of being not believed or seen as a hypochondriac time waster.

Thank you so much for reading this

Marie

Sorry I didnt know I needed to send to people I thought I could send to all, so please I hope you don't mind who I've sent to thanks

hmg101190 25 minutes ago

12 Replies

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  • Hello hmg ,You have managed to post this correctly onto general posts, Though in future you may like to lock your posts so that they are only seen by the community.

    To do that when you have written a post click on community at the bottom of the page.

    Welcome, you have been through it but your story is not unusual.

    when going to see the Neurologist take a list of your symptoms with you and ask if it could be Fibro you could also ask for the tender point test.Not very reliable but can give a good guide as to diagnosis.

    This is how to get onto our mother site where you will find lots of information about fibro that you may find helpful. fibroaction.org

    Dont foget that you can come back to us at any time and we will do our best to help and advise you. Oh and it was a neurologist who diagnosed me.

    sue

  • Hi and welcome hmg. Im Sorry that you are going through so much pain and suffering. I wish I could give some good advice, but I don't feel I can. I'm sure someone will be along shortly to give you some good advice as there are many people on this site with the experience and knowledge to help you and ease your worries. Wishing you well, Mags x

  • The only advice I can give is to write things down that you want to address specifically, it is too easy to forget your main concerns if you feel at all flustered. I do hope you get the answers you need. Lou x

  • Oh golly hmg, you do have a lot of rotten things going on, poor you! A lot of the things you have described have been experienced to some degree by a fair amount of us here, though possibly not all at the same time. Rather like sue, I'm wondering if you have got a proper diagnosis for fibro, and if not I agree a trigger point test would be worthwhile! I suffer hugely with itching which has been diagnosed as a nerve ending reaction and is pretty par for the course in some people with fibro, but can, as you say, also be a reaction to some meds.

    If you can, I would sit down with a cup of coffee/tea and write down all the matters you are concerned about, alternatively if you have a laptop or tablet, perhaps take this post along with you to show him, which may help and also give him a clear idea of the extent of your concern.

    Sending lots of positive vibes your way 😊😊

    Foggy x

  • Oh thank you all soooo much, I know there's people out there a lot worse than me but you have those moments when you just don't know what to do, I'm shaking so much, but some of that's the norm, but I will try to write things down. My daughter works at the hospital and can usually attend with me but she's had to go cover at one of our other hospitals today.......someone's law I reckon?!

    I am so grateful for you taking the time to read my ramblings, thank you again and thanks for the note about posting too! I wasn't sure who I'd asked!

    I am so scared I feel sick, but again that isn't that unusual either......flip you forget half the stuff as it becomes what's just normal.

    I will get it all written down tho or take my tablet, would they think me weird for doing that?! But I will most certainly let you guys know how I get on, if I can remember how I did it this morning.....or I suppose it would be a reply and I think this will be in the right place?

    Thank you x

  • Take whatever you need to get your point across, don't feel intimidated. This is all about you and your health. xx

  • Welcome to the site, sorry I missed your post as only just come on the site. Hope that your meeting with the specialist went went this afternoon. It sounds as though you have a tremendous amount of things going on healthwise and with all the medication and symptoms it must be very difficult to sort out what is causing what. I think sometimes when we are on so many meds with their side effects it can all mimic many illnesses. Hope you get some answers and please let us know how you got on.x

  • Welcome to the forum and I sincerely hope that you find it useful, informative and loads of fun! Sorry for the late reply to your post and I sincerely hope that you appointment went well for you.

    I would have said to take as many questions with you as you possibly could by writing down the one's most important for you to receive answers to. MS can be seen straight away via and MRI as lesions show up on the brain that are unmistakable. As for many of your symptoms they are what I personally suffer with as a result of my Fibro.

    I want to genuinely and sincerely wish you all the best of luck and I hope that you find the answers that you so desperately desire and deserve.

    All my hopes and dreams for you

    Ken

  • Hi Marie, first of all welcome, and sorry things are so bad for you. I'm guessing you've already seen the neurologist, I hope it went well. All I would suggest, is that you ask your doctor to test your blood for low B12, folate and ferritin. When these are low it can cause lots of symptoms, and add to what you are already dealing with. Best wishes MariLiz

  • Hi there hMG, hope neurologist helped. Sorry you feel so yuk.

    If I feel nervous about meeting someone I imagine how they look when sitting on the loo, as we all do. Or, a clown/cartoon/sheep face superimposed on their face. Trouble is, then I miss bits of what is said !

    I take someone in with me so they can listen too, perhaps remind me of points I want to make as well as taking a a list.

    I've tried writing out my questions and o give to th doc. Not all of them are receptive to this ! I often make quick notes.

    It would be good to find a way of recording what is said so that we can play it back !

    My neurologist had 'verbal diarrhea'through our appts, went on and on rambling till I could have dropped off the chair , literally, hard to stay upright ! He Had NO tact. Splurged out whatever possibll horrors he could imagine, medically, ie 'you hahave a very abnormal brain scan '.

    Then he retired and I had trouble getting any follow up, the diagnosis is still not a firm one but at l At least I found out what I have NOT got !

    Shaking can zap confidence, I know.

    People have said that I am weird all my life, I quite like that ! Sorry, typing messy. Doesn't matter tho. !

  • I can add little to the above good advice. Taking and reading from notes shows you're engaged in your own health and are clear about the problems. Keep the notes concise and clear, no waffling or you just divert attention from the real troubles. I hope you find what you need. :)

  • How did you get on with the neurologist?

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