years of symptoms, told to put up!

New diagnosis and before diagnosis
1

hi guys, im new here so i apologise for what must be a repeat of people asking the same kind of thing but acvtually cant find anything that relates to the length of time i have been experiencing symptoms.

so basically i started in summer of 2008 of waking up one morning with a blur in my right eye. like as if looking through a glass of alka seltzer.

went to opticians, they refered me to ent and did a test which showed a slight disturbance. i was then refered onto a neurologist who had me do a vep and a mri. at this point in time i had no other symptoms, i had clear tests and was told i was optic neuritis. this settled down after about 5 weeks and that was that until the next year in spring when i collapsed all of a sudden, my legs just disappeared from under me but i did not pass out.

really hurt my back in the process though. after this happening i started to get things like pins and needles in hands and feet, pains in my face, shooting pains down an arm into my little finger or down the back of a leg, balance issues and for some reason i started getting digestive isues too like bloating, cramping and nausea.

went to my docs with all these problems after my balance issues and facial pains got bad and he prescribed me gabapentin for the pain which helped, but did not refer me bk to neurologist as previous tests were clear. my symptoms after a month or so calmed down but the facialpains and digestive issues have never gone away apart from when i went through two pregnancies.

now since dec 2012, after the birth of my 3rd child, a lot of these symptoms have come bk with a vengance. my balamce was so bad that i couldnt walk in a straight line, my facial pains were making my eyes water sometimes and the pins and needles were horrific. i went bk to the doctors (a new one) explained current symptoms and history, and he said i shouldnt have been left last time i fealt bad.

so i gets refeered bk to neurologist and he gives me the once over and said there is some balance issues and areas of numbness in feet but nothing conclusive. he doesn’t think there is anything wrong with me but put me forward for an mri anyway. had that on thursday and am awaiting results.

but the neurologist said that he thinks theres nothing wrong with me and that our bodies sometimes present these symptoms but theres not actually anything wrong and that i’ll probably have these recurring syptoms all my life but theres nothing behind them?

now to me that just doesnt sound right, im not looking for a diagnosis of ms, id rather be told i have something that can be fixed. but i cant possibly be having all this pain etc for nothing?

Its been going on all this time and im really fed up of it now, and i dont know what to do. i thought if its not ms then he might point me in the direction of someone else who could help but he basically told me to put up with it and heres your meds. made me feel like im fabricating it.

if anyone has some advice on what i could do, if anything, it would be greatly appreciated. and i ever so sorry for the long winded post!

thanks guys =)

2

Hi

Sorry I’m no expert but rather than just read and run I’ll just say that I wouldn’t accept that as normal and ask for a second opinion. My symptoms are different to yours but neurological disorders present differently. I’m still waiting for a diagnosis but have also suffered for years and been fobbed off so many times but eventually ended up with someone who took me seriously and found serious problems, operated but still believes there is probable MS and referred me to another specialist who has promised to get to the bottom of it. You obviously have a young family and although it may or may not be MS you do need to know. I was lucky and had a good physio, it was her not my GP that got my referral, so keep on trying.

Good luck

Min x

3

Hello and welcome :slight_smile:

Why this neuro said what he said is impossible to know for sure, but I would guess that he was trying to be reassuring. Some neuros struggle to get their bedside manner right, but it doesn’t really matter as long as they know what they’re doing - hopefully this one does.

Your MRI results will almost certainly determine what happens next so there is little point in worrying until you know what they are. If there are signs of MS, the neuro will change his tune. If there aren’t, then you may have to go back to your GP and have another think about what might be causing your symptoms because it might be one of many MS mimics.

Hopefully the results won’t take too long to come through. Until then, try not to worry about what the neuro said.

Karen x

4

thank you for you replies. i think once ive heard bk about the results from the mri and bloods, if the neurologist says thats all ok im defo going back to see my doctor. he didn’t seem quick to see me off like my last one, he actually sat and spoke to me properly about my syptoms but said that he thinks that the syptoms are like that of ms but obviously refered me to a specialist to see what they say.

but i really dont think someone can go through specific types of pain with no cause behind them. its the facial pains that really get to me because they dont seem to fully go away and they can quite harsh sometimes that i have to stop what im doing.

i drive ambulances for a living and want to progress to paramedics but i dont trust my body to behave and worry that i might get the wobbles again or something. just want it sorting really, like anyone else im sure. but thank you for your feedback, it is greatly appreciated =)