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Explaining symptoms in the best way!

So, I have a neuro appointment on the 1 August, my worry is that because my symptoms are a bit ‘hit + miss’ that I wont be taken seriously. Yes, ive had pins and needles on 1 side of my scalp and on the right side of my face, ive had the bizarre feeling that water is dripping on my arms as well as a tingling in my toes. But ive only had 1 episode of blurred vision which lasted no more than 3 minutes, though i do keep seeing shiny flashing zig zags.

Im also having a serious urge to pee and even when I do I still feel like I need to go, infection has been ruled out, but my GP says its my age (im 39). Anyway, i want the neuro to understand that all These things and more are happening, even if some of them are fleeting.

I also have an opthamology appointment on 11 August as ive had perception problems with my eyes for almost a year now.

I know that these things need to be investigated because of what happened to my hearing, but i dont want the neuro thinking im paranoid (even tho I am a bit scared of something else major happening). Its just that when I lost my hearing 3 years ago, ms was mentioned as I had severe balance problems and ‘shaky’ vision at the time too. Its not that ive worried about the ms thing for the last 3 years, i put it out of my head, but now these things have happened i am concerned that something else is happening.

Any advice welcome

Gogirl

Hi Gogirl

I am seriously annoyed that your GP has put this all down to your age! How bl**dy dare he/she!

The advice I would give you is to write things down e.g. dates/times when symptoms happen, what happens etc. Also think back through the years and write down if you have had anything strange happen medically over the years. Go through the list with the neuro and then hand him/her the list at the end of the consultation. Keep a copy for yourself though and continue to add symptoms when they happen.

Good luck Gogirl and ((hugs)) as it is a worrying time for us all.

Paula xx

Hi there,

I agree with Paula, how stupid of your gp to say your urinary problems are caused by your age!

I have a urinary problem in the fact that I find it difficult to hold on to the urine when I need to go so I have to get to a loo double quick to prevent leakage.  I went to gp who prescribed regurin. I was also prescribed Amitriptylene for a different symptom ( arm spasms ) but I have found that this has helped the urinary problem to quite a large extent so I actually haven't taken the Regurin.

I'm just wondering whether Amitriptylene would help you as sounds like your bladder may be going into some kind of spasm.

Your description of your blurred vision and flashing zig zag lines sound just like the classic symptoms I have when I've got a migraine but it seems like your not getting the awful headache that usually accompanies this.

You definitely need to write things down espeicially how long each symptom lasts and when they started etc. I remember my neuro asking me loads of questions about timings and I just couldn't remember a lot of things.

Take care

Anne-Marie

Hi Anne-Marie & Paula

Your both so right, it was a bit silly of my GP to say the urinary thing is caused by age. I had noticed the urge thing for months, but then there were a couple of times I didnt quite make it to the loo, hence the visit to the GP. Mind you, this is the same GP who when I was losing my hearing said “Oh everyone loses theyre hearing, its just happening 20 years early for you”!!

I am so gonna write everything down for the neuro, mostly because I know I wont remember to tell him/her everything, but also I get so caught up in trying to hear everything that they say that my mind goes blank!

Anne-Marie, I was getting awful migraines and now take propranol which has really helped, though I can honestly say I never had the zigzags or blurred vision just before or during a migraine.
You also mention your arm spasms, I had a few weeks were both my lower legs felt like they were going to get ‘cramp’, does that constitute a spasm?

Paula, thanks for the ((hugs))

Thanx for the replies, much appreciated

Gogirl

hi all

i just read your posts and they have answered alot of my own questions, i was having the same fears as gogirl, waiting to see a neuro and wondering what to say, i think its good advice to write down everything cos im sure to forget dates and symptoms etc....imfinding these posts really helpful as i feel like im doing my own head in waiting

thanks allhappy2

xxxx

Hi everyone, I have had symptoms like all of you. Very bad headaches tho were strong painkillers take forever to work! Blurred vision, stiffness and jerky movements of my legs, I have had 3 attacks now in 2yrs. Always dizzy, and I have stopped driving because I find I cant judge distances, memory loss and thinking things through are also a problem.Would just like to have some answers, I have had tests done for Meniere's Disease, but still waiting after 6weeks!!!

Jan

Hi Gogirl,

I can only describe my spasms as a sudden extremely tight feeling in my arm, like someone was squeezing so hard that you catch your breath at the sheer pressure of it. It leaves my arm with a horrible dull pain afterwards and feeling very heavy.

I'm not sure if your leg feelings are spasms, they could very well be, I think some peoples spasms are "jerky" I guess everybody gets affected differently. If cramp like feelings are something new to you there must be a reason for you experiencing this and there is a chance along with some of your other symptoms that it could be ms. I think there are so many ailments which mimic ms. I've only been diagnosed with ms 4 months and that was mainly on the strength of a brain and spine mri.

I notice that you said you had bad balance problems but do you think this would be due to your hearing impairment rather than suspected ms? Sorry, I'm unclear as to whether your hearing loss is permanent or whether you were affected for a shorter period of time. I think the ears have some control over balance.

I've never had blurry vision, the only problem I get with my eyes are loads of black floaters ( but that started at least 20 years ago) and recently, from about 2 years ago,  sharp pains in my left eye for no apparent reason but they can leave that eye a bit sore for a few hours.

I think any neuro should book you in for an mri as this can be a very good indicator as to what is or isn't going on.

Good luck with you appointment.

Anne-Marie

 

 

 

Hi all

Jan, menieres disease was suspected when i had my first episode of extreme dizziness and hearing loss but I was told the episodes were too prolonged ro be Menieres as they lasted weeks rather than days. Eventually i suffered complete and permanent hearing loss, I had an mri of the brain which was apparently normal, there was talk of a lumbar punture but it was never carried out.

Anne-Marie, yes apparently my balance problems are due to vestibular nerve damage which happened when my hearing was being attacked. The only explanation I was given for my hearing loss was that my immune system went into overdrive and attacked the nerves in my ear. My balance remains very poor and I seem to have no spatial awareness, im forever bumping into doors, people, anything in my way really.

Im hoping another mri will be done, then it can be compared to the one from 4 years ago

I did see a neuro with regard to the loss of hearing as the ENT Dr’s were pretty stumped, with regard to my loss of balance he basically said “you’ll never be a tightrope walker” and “the brain can adapt” im not sure if it does, maybe we just get used to it, or maybe thats the same thing lol!!

Jan, one of the reasons ive been referred back to the neuro is because im now having difficulty with perception and distances whilst driving, its almost as if my eyes arent working together and its taking my brain longer to process what my eyes see, if that makes sense.

What a journey we’re all on, it really messes with your head, doesnt it??

Take care all

Gogirl

Hi all

Jan, menieres disease was suspected when i had my first episode of extreme dizziness and hearing loss but I was told the episodes were too prolonged ro be Menieres as they lasted weeks rather than days. Eventually i suffered complete and permanent hearing loss, I had an mri of the brain which was apparently normal, there was talk of a lumbar punture but it was never carried out.

Anne-Marie, yes apparently my balance problems are due to vestibular nerve damage which happened when my hearing was being attacked. The only explanation I was given for my hearing loss was that my immune system went into overdrive and attacked the nerves in my ear. My balance remains very poor and I seem to have no spatial awareness, im forever bumping into doors, people, anything in my way really.

Im hoping another mri will be done, then it can be compared to the one from 4 years ago

I did see a neuro with regard to the loss of hearing as the ENT Dr’s were pretty stumped, with regard to my loss of balance he basically said “you’ll never be a tightrope walker” and “the brain can adapt” im not sure if it does, maybe we just get used to it, or maybe thats the same thing lol!!

Jan, one of the reasons ive been referred back to the neuro is because im now having difficulty with perception and distances whilst driving, its almost as if my eyes arent working together and its taking my brain longer to process what my eyes see, if that makes sense.

What a journey we’re all on, it really messes with your head, doesnt it??

Take care all

Gogirl