Hi everyone I’m new to all this so please bear with me. Have diagnosis of chronic fatigue/fibromyalgia but have had have had many other symptoms over the last couple of years. I have been referred neuro by gp and consultant after falling over and suffering funny turns (weakness so bad I have to lie down wherever I am and feeling like jelly). I also have numbness and tingling, loss of sensation on left side of body. Balance issues and feeling like I’m walking on a ship, pain behind my left eye and my memory is really awful. I can be driving the car and have to pull over as I can’t remember where I’m going! I also feel stupid - people talking to me and me taking ages to work out what has been said and my response (it feels like forever but I know it’s not). A massive problem I have is heat intolerance- the hotter I get the worse all my symptoms get! When I went to neuro today he examined my reflexes, looked in my eyes and did a few basic tests. He said I ‘presented normal’ and as I had a MRI 6 years ago he wasnt going to test for anything (I know it may not be MS). He said I was lucky he wasnt looking into my funny turns as it may be epilepsy and then I wouldn’t be able to drive! He also said the loss of feeling is suffered by many and doesn’t need explaining. Whilst I’m happy to not have evasive treatments, I’m only 35 and these things are not ‘normal’. What shall I do? Really desperate, upset and frustrated
Sorry to hear this. This struck a chord with me due to similarities. There are a few things you could do. if you are sure that something is amiss then speak to your GP about getting a second opinion. from personal experience, my neuro’s attitude towards me changed when i mentioned cfs/fibromyalgia. He basically told me i was wasting his time and he thinks i do not have a neurological condition so i asked what was the reason for me walking like a 90 year old instead of a 28 year old. He replied with “i don"t know” …& then decided to send me for an mri… hmmm. He said upon examination i was fine despite 2 GPs saying my reflexes are sharper than normal and that i have weakness. They were much more thorough with me than the neuro was. It is your body and you know when something isn’t right. Don’t let them fob you off without investigation.
This is what I’m dreading when I see neuro in nov, as I have fibro and every time I see my doc she just gives me more tablets and says im in a flare, but after I went opticians and found to have optic swelling I’m hoping neuro take me serious and look into all my symptoms as I also think they are more than just fibro. I would defo push it to see someone else.
I am similar too. I have had a diagnosis of m.e/cfs for 13years. I have had 2 MRI’s in the past that showed nothing but the one i had in july showed 6 lesions but the neuro said it didn’t match how i was and i passed all the neuro tests etc. I had a LP 2 months ago which showed nothing so i am scared the neuro will just discharge me and say it must be m.e when i see him next.
I am 44 so i know having 6 lesions and all the weird symptoms i get aren’t normal.
Sorry neuro made you feel stupid, this happened with my first neuro who I paid for a private appointment as the waiting list was long and my GP felt I needed to be seen soon.
Laughable but neuro said my reflexes were normal too when clearly they were not nor have been since, which was why my GP made the referral in the first place after she checked my reflexes and found abnormalities.
The neuro then after quickest neuro exam ever asked can you hop on one leg to which I did he said youre OK then,.must be migraine associated vertigo and prescribed beta blockers. No other tests offered.
My GP was horrified with this outcome and after checking my reflexes again the same day as said neuro arranged her own brain and C spine MRI scan which showed non specific hyperintensities so was sent to new Neuro who instantly thought MS and did another MRI and LP which were non conclusive at that time as no changes.
What I am trying to say is dont give up if you feel your problem has been fobbed off try and get your GP behind you and ask what else you can do and perhaps see someone else.
My first neuro 4years ago also told me that memory loss, getting words wrong and burning/tingling pains were normal (in someone in mid 30s). Didn’t even do a neuro exam. I’d ask for a second opinion Axx
[quote=“Ghodavies”] He said I was lucky he wasnt looking into my funny turns as it may be epilepsy and then I wouldn’t be able to drive! [/quote] That strikes me as just plain irresponsible, as if he did suspect epilepsy and let it go, wouldn’t he be endangering both you and other drivers?! I’d demand a second opinion, if I were you! Wishing you well