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nero appointment soon quite anxious : (

Febuary this year i have had 2 really bad migranes in the night coming from my right temple causeing me to feel sick and a great deal of pain.After the second migrane i woke with a tingle on my lip within the next day or so it spread up to my lower eye lid and accross my right temple and accross my jaw line causing it to be totally numb feeling like rubber i also couldnt feel my teeth and had difficulty brushing them.

I went to the doctors a few days later as i was away when it had occured and he seemed to think it was migranes, didnt really feel satified with this and was not fully confident in this doctor plus would not give me any medication to try and get it back to normal, so i went back the next day and seen a different doctor he did give me some medication for migranes but it made me feel sick plus he was extremly rude.

I called the surgery again and spoke to a friend of mine who works there told her the issues i was having so she sorted me an appointment with another doctor who she recomended. He was brilliant and taken the time to talk to me and seemed to care he said i dont think migranes are the problem and would like me to have a mri and would put it down as urgent so would take around 14 days i felt better as i had been listened to but wasnt concerned as i had it in my head that it was bells pasey as that was symptoms except there was no facial drooping.

I had a relaxing weekend after that having a lazy sunday lying on the sofa when i went to move i had this extremley sharpe pain in my chest on left side it was like a stabbing pain very intense i was screaming in pain tried to get dressed i couldnt had to get my huband to help me, he said were going to hospital this is not right pain was constant not going then pain started to run down left arm i was holding it very close to my body pins and needles down the side and into my 2 end fingers. The hospital seen me straight away putting me on heart monitors and taking blood and xray after 4 hours the pain had gone and they said they couldnt find anything i was so confused, the nurse seemed to think it was bells pasey.

Lucky enough there was a cancelation on the wens so i could have mri after waiting a few days, had it then they said 1 week for results. Went back expecting nothing as i felt better he said there is a irregularity on scan my heart sank recently losing a friend with a brain tumor i thought the worse i asked what it could be he had said it could be a trapped blood vessel or ms but he said with your symptons i think it is ms me being me didnt ask him to explain he just said dont look on net as you will only worry yourself and i'll refer you to nerology, had to go back on shift then in absolute shock lucky the other staff member i was working with was a very close friend and she calmed me down we did look on this site and i realised it wasnt as bad as i thought.

My face is very slighty numb still, and i get like electric head aches and feels like electric shocks down arms and legs and odd hot patch on body and im exremley forgetfull and suffer badly from depression going up and down but mainly down.

I havent had appointment with nero yet and quite worried about it anyone got any experiance with carmarthen nero?

Sorry for easay and bad spelling and grammer scared

Hello mel will you be going to GlanGwilli hospital as I see the Neuro Dr Hind.

He is a little dry when he speaks though.

You will be fine,a neuro will ask you some questions about your symptoms,he will most likely ask you take your shoes and socks off and ly on the bed to test your reflexes.So make sure you were clean socks just kidding.

If he thinks there is any issues he will send you for a VER test on the eyes,lumbar punture and maybe MRI.

VER test is done at GlanGwilli and the MRI and there is free parking outside the building were you have the VER test.Lumbar punture is done in Singelton hospital Swansea.

Try not to worry or stress,you should be fine.

 

Charlie.x

 

 

Hi Mel xxx So sorry you are going through all this xx I know how worrying and scary it is x

All I can say is hang on in there - once you see the neurologist you will have a better idea of what is going on - you now have some time to write down all your symptoms and a list of questions for him x your GP cannot diagnose MS - I'm in the same boat where mine also suspects MS x

The neuro will probably order more tests for you before coming any conclusions x you have been quick so far but be prepared that from now on things may slow down a bit x

Keep coming on here - so many people have been in the same postion as you and they are always willing to answer any questions you have xxxx

I've sent you a private message as I live near Carmarthen - although I'm under the Morriston neuros I have a feeling that they work out of West Wales too as it's the neuro centre for the area xxxxbutterfly

Hi Mel,

Sounds like you have been on a rollercoaster of a journey but hopefully, once you see the neuro he will put you at ease.  I don't have experience of neuros in your part of the world but in my part, which is London.  To be honest, I couldn't wait to see my neuro as he is the best person to see.  Your first appointment will involve reflex tests, and he'll test your numbness as well.  I know it's easier said than done by try not to worry.  Write down any questions you have so you can ask him on the day.

Good advice from Charlie about the clean socks as you'll be expected to take your shoes off.

Good luck with your appointment.

Kx

Hey Charlie! I knew you were Welsh but not how near you are to me xxx I'm from Ammanford xxxjenxxx

Well Well Kizzy your just up the road from me.

If you see a woman with long hair,metal band T-shirt n hoodie,facial piercings and tattoes on both arms with a pair of the arthritic handles crutches walking slower than a snail then you know its me LOL.

I'm just one of these people who like to be in control, i've got an idea of where i want my life to go and always want to know whats going on so i can prepare and knowing that im going to go to this appointment soon and knowing its not going to give me the answers i want to know is so frustrating the amount of time people have to wait is unreal.

One minute i get it in my head that thats what i got then im like no it cant be, its all i think about its very consuming, ive got no family history only thing thats close is my half sister and aunt on my dads dide have autoimmune diseases.

Will prob be wearing my flip flops so should be okhappy2

Is there anything i need to prepare for, for first appointment and will i see him again if i had to do them tests, lumbar punture doesnt sound good have you had that?

thanks

mel 

Ewww! It's a small world eh!!!

I'll keep an eye out for you - although I'm stuck in the house most of the time at the mo - apart from my trips to the docs!!!  

If I see you I'll honk my horn loud and clear and shout SOLIDARITY!!!! out the window - so you know it's me and not some random nutter - well it is a nutter but I'm not a random one - I'm a nutter with a connection!!!

xxxjenxxxx

If its GlanGwill Mel,what Hind told me was once Ive had the tests done then to arrange an appointment for three weeks time,but his secatary aint always there,but if you are under him I have her number for Moriston hosp somewere.

Im afraid to say it all takes time mel.The VER sensory eye test appointment was in just a few weeks,the lumbar puncture I am afraid to say is a at least six months waiting list,however your GP can write to Singelton if thats were you have to go and they can request this waiting time is speeded up.

Write all your symptoms down so you dont forget anything,how ever neuro should already have a list there but your GP may of not sent a full assesment so best to tell them everything.

Some say the LP hurts and or gives you a headache,Im waiting for mine still,my physio has written to my GP to ask them if they can ask Singleton hosp to speed it up.Although I am being treated for MS and the doctor told me I had MS I am still waiting.After I have the LP I am to ring Hinds secatary and arrange an appoint for three weeks later.I discovered a few weeks ago that its already on my file that I have had MS for around 20 years.

The VER test is six probes on your head watching two diffrent checkboard effects moving,how ever it detects if your stressed and muscle movements wich marrs the test you must relax during it.

Just be relaxed,write symptoms down and any questions you need to ask,dont stress out.If you need help or medications in the mean time you can see your GP,Social Services can help in getting you a physio if needed.

I will say ask your neuro about any medication he can give you to help you.He will then refer a prescription to your GP,however his secatary keeps taking days off it took three weeks to get mine to my GP with loads of phone calls and angry upset.

 

Kizzy just please dont run me over lol.

I look diffrent but I am realy a nice warm hearted person.Some people run but many do welcome me.

 

 

thanks guy's this info and support is really helpful, did write a longer reply but lost it lol cant rember what i wrote now ha ha, new to all thisthumbsup

Mel I just cut and pasted this advice from a very lovely lady called Karen x

Hope it helps xxxJenxxx

 

The following is advice from the lovely Rizzo (I'm sure she won't mind me cutting & pasting it!)xxxxjenxxxhappyflower

As Chis said, please write a list of things for your neuro appointment. Try and remember when things happened so you can put rough dates next to the symptoms (when they started, how long they lasted / if you still have them) and look back over your life to see if there is anything "weird" that you've had before that might actually be related. Keep the list as concise as possible and make a copy of it. Do not hand it over to the neuro or it may end up not being read properly! When she/he asks you what's been happening, read through the list bit by bit, pausing to let the neuro take notes & keep up with you and answering any questions he/she has, then going back to the list until it's all done. If the list is too long, you may lose the neuro's attention and/or interest(!) so try and keep it brief and get the important things in. At the end, give the neuro a copy for your file.I'm sure everything will 

Watch the ‘verification’ thing that comes up randomly after you post!! It’s a nuisance I lost flippin loads of long winded ‘chapters’!! (probably a good thing for others!!!) by not being used to it!! xxxjenxxx

Mel sometimes the forum asks you to put in a verification code,if you dont do it the post is still there but you need to click the back button on your browser.Then find your comments and input the code then it will post.

Glad we could help mel,any questions or if you just want a moan we are here for you.

Let us know how things go for you.

Goodluck.

 

Charlie,x