4 feels like the rooms spinning nearly all the time
5 sometimes burred but mostly double vision
6 all my body locks up at times but miany knees
7 night sweats well not just night but mainy
8 memory problems sometimes ok others forget it
9 got told its a possable for narcolepsy but now been told its not that
right now to start i’ve had a mri scan on the brain and that come back clear so they saying its not ms. yet in the last 3-4 months its got worse over the time.
so can some one help please sorry about the long post
Hi there, That’s quite a list- no wonder you’re concerned. I don’t know enough about neurology to be able to comment on a diagnosis (only recently diagnosed with MS myself) but I would say that it can take time and lots of tests to get to the bottom of it. In my experience Neurologists are extremely considered and thorough. You’ve had the MRI which is great, but what are your next steps? Are you seeing a neuro? Take care xx
they are now saying its all in me head & im making it up i just wish i was
i’m not the only one who has noticed it too, my partner has and friends who have seen me have noticed i’m getting worse but the neurologist i’ve got still says i’m making it up grrrrrrr
I really do wish that some neuros would follow their own guidelines and stop using dismissive language like “making it up”! “Functional neurological disorder” is not anything that anyone would wish upon themselves because the symptoms are very real and potentially very debilitating. Do you have this? I have no idea, but if you have a look at www.neurosymptoms.org, it explains all about it so you might be able to work out if it’s possible for yourself.
But given how much your symptoms are bothering you and that they are getting worse, it might be a good idea to ask for a second opinion. Also, to have your spine scanned. There is a small, but significant percentage of MSers who have clear MRIs. There is also a larger percentage of MSers who only have lesions in their spinal cord. These things mean that MS should not be ruled out solely from a clear brain MRI. So if anything was abnormal in your clinical exam, I would think a second opinion is definitely warranted.
You should also ask your GP to refer you to an ophthalmologist about your vision and a neurophysio for your vertigo/dizziness. And have you had inner ear problems and Meniere’s ruled out?
Your present neuro has sent you for a brain MRI - what about the spine? MS can come with lesions anywhere between the brain-stem and the thoracic vertebrae (and some people with MS never have brain lesions).
If you don’t have confidence in the present neuro, maybe you should ask to be referred to a new one. If you do, don’t hit the poor guy/gal with the whole list of your problems - cut the list down to the ones that will help them with a diagnosis:
Balance, numbness, double vision, fatigue. These should be enough for you to be taken seriously.
Vertigo can be part of Balance, so leave it off the list unless asked. Leave Memory problems unless asked. Forget Narcolepsy and the odd night sweats - all you do by mentioning them is to cloud the main problems.
If you cannot change the present neuro, tell them that your biggest problems come from Balance, Numbness, and Double Vision, and let them focus on those three things.
Hi Chris, well there clearly is summat wrong. Our hands are tied when it comes to neuros and specialists. We have little say in who we see…unless we have a spare couple of hundred quid to see a private doc, eh? Been there meself and still no wiser after 14 yrs.
its like luckier im in a ground floor flat but with 2 steps into the block and a big heavy main door trying to open that and get up the steps is like a uphill stuall when im at my worse
been trying to move but all the council say is your on the list to be moved grrrrrr
and to top it off the handle on the main door keeps braking and so we are down to using a ring to open the door grrrrrrr
and its like we are getting the blame for it being broken as we are on the ground floor so we should hear every thing but we don’t so thats making every thing worse too
another stange thing today i want out to littlehampton to see some friends and when i was there it was like feeling tired,
It had not stopped but it was better then it had been for long time then got away from there and it was like it slowly started to creep back worse then it has been,
do you think its the sea air sort of helping or anything like that
hi all i had another apptment with my doc & got told its all in me head as in i’m just making it up yet i’m getting worse so how does that one work grrrrrr
Can you change your Gp or see a different one in the practise? I think you can self refer yourself to the local urology clinic, an idea if you have bladder problems. I feel like a hypocondriac sometimes as my MRI of spine and brain was clear, but I am lucky that my Gp supports me. If they say its all in your head, which I’m sure it’s it’s not, have they sent you to see someone? Might help if you do see someone as they will see you on a regular basis and see that you are getting worse, also be able to tell your Gp that its not all in your head and be able to req you have a cervical spine MRI. Also a good idea to keep a symptom diary. Good luck and hope you get some answers soon.
Hi Chris - you are not making it up! But it might be that there is no physical damage. Many many people have neurological symptoms without damage, the brain just isn’t sending and receiving messages like it should. Your neurologist and doctor are not being very helpful if they aren’t telling you this. Please do read www.neurosymptoms.org as Karen advised and see if you recognise your symptoms there. The foot dragging is certainly one of the symptoms.
Hi Chris - I would strongly recommend getting a referral to a continence nurse. I too was constantly in the loo. Self catheterisation put me in control of my bladder. A tablet called desmopressin stopped me getting up at night. Also other tablets as a first line strategy - I’m on tolteridine. You can self refer to some continent clinics to cut out the doctors! Phone your local hospital and ask. you will probably need a bladders scan. - you go for a wee - they then scan you to see if you have more wee in your bladder - painless. Sorry I sound like a real nag. Finally shy bairns get nowt. Hope this helps Hugs Min xx
and that the last appt i got told i’m on the list to go though to another doc when i have to talk my problems as they say thats what my problems are but been told that could be a year or more before i see them grrrrr