Uk peoples - Getting test results?

[Loopy Lou]

Hey there. The reason why i'm putting this as UK people is because i think in the US things are different with regards to waiting times for test results.

But anyhoo, i had my MRI on the 27th March, and my EEG sometime around the 7th-15th april (the exact date escapes me at the moment). They said it would take about 2-3 weeks, but that was quite a while ago, and phone calls to both my neurologist and the GP have turned up nothing.

How long did you have to wait for your results? I figured that if there was something wrong with my MRI they would have contacted me pretty soon, but i'm getting anxious about it. Plus my work needs to know for risk assessments and such. Also, i really want to know my EEG results.

So yeah, i'm just wondering how long you had to wait for yours. Would they have contacted me by phone or letter if the results were ok? Getting antsy now, and it's a bank holiday too, so i can't ring up today

[Crazy Monkey]

I find the health service in the UK very poor compared to what I read from the USA residents on CWE. I find that if I want to know test results I have to chase the arse off my doctors. They don't seem to realise how worrying it can be just sitting around waiting.

If the results are ok, I never normally hear unless I contact them.

[dfwtexas]

I am always shocked about the time to get test in UK...I didn't realize there was a long delay in results too.
My first visit to neurologist's office, he told me that I needed EEG and MRI. I had both test the next day and got the results the day after that. Our president is really scarey that he wants to go via national health care for all, apparently he is very ignorant. Who would want to go to this system?
I would keep calling...these tests are too important to be delayed.

[epileric]

I had a seizure in the docs office & he ordered a CT scan. I got it as soon as I decided to go down. For the MRI though I had to wait a few weeks as there aren't very many in my city.

[ceiliclare]

Hey there. The reason why i'm putting this as UK people is because i think in the US things are different with regards to waiting times for test results.

But anyhoo, i had my MRI on the 27th March, and my EEG sometime around the 7th-15th april (the exact date escapes me at the moment). They said it would take about 2-3 weeks, but that was quite a while ago, and phone calls to both my neurologist and the GP have turned up nothing.

How long did you have to wait for your results? I figured that if there was something wrong with my MRI they would have contacted me pretty soon, but i'm getting anxious about it. Plus my work needs to know for risk assessments and such. Also, i really want to know my EEG results.

So yeah, i'm just wondering how long you had to wait for yours. Would they have contacted me by phone or letter if the results were ok? Getting antsy now, and it's a bank holiday too, so i can't ring up today

Hi Loopy Lou,

Sorry to hear that your being left in the dark for so long. I've found that in general when there's something suspicious on the test results you get a quicker response. Not that you should breath easy, just that in Boston(USA) I've had lots of tests over the years and only time I did'nt wait at least two weeks was when they found something remarkable on my MRI and wanted another MRI done. Really it depends on the facility, your neorologist and here at least your HMO. In general it takes months to get an appointment with a neorologist, then a week to three weeks to have the tests, then another 2 weeks to get a letter informing me that my images/test results were "unremarkable" or I get a letter in a week asking me to call my neurologist to schedule an appointment to go over the test results. Everyone in my family has epilepsy and this is the typical wait/response time for us. Obviously in emergency treatment the test/result work is much faster.

Maybe you could try to put your employer/people at ease the way I did for my son. When my ten year old had a tonic/clonic we brought him to the doctors the next day, prelim. testing showed he was ok, but his school wanted a full diagnosis for risk assessment before he would be allowed to return to school. His neurology appointment was 3 weeks away. I had the school nurse write a note/fax to his neurologist, who then based on pediatric evaluations wrote a brief outline of seizure potential, and emergency guildines for the school as a sort of placating measure. Possibly you or your boss could make the same request.

I hope you get some answers soon, don't give up!

ceiliclare

[Meetz1064]

live in Indiana, and I can get in and out of my neurologist's office in a couple of days usually....even the same day if necessary. Testing, like MRIs, vary.......usually there is about a week's wait, the answer comes about 3 days later, and if there's a huge problem, the office calls me to come in sooner than my scheduled return appointment.

I don't know if I could mentally handle the waiting game, like y'all do......

[ceiliclare]

live in Indiana, and I can get in and out of my neurologist's office in a couple of days usually....even the same day if necessary. Testing, like MRIs, vary.......usually there is about a week's wait, the answer comes about 3 days later, and if there's a huge problem, the office calls me to come in sooner than my scheduled return appointment.

I don't know if I could mentally handle the waiting game, like y'all do......

In Mass where health ins. is mandatory! the wait for a neurologist visit is extreme-for my son-a priority visit is a three month, standard for childrens hospital-typical wait is six month. They're excuse-"we treat people from all over the world-you have to wait to get the best" I don't care that much about the best it's the only one we can take the train to! That's why so many people I know uses the emergency room treatment center.

Wish it was easier-tried talking with Sharon from EFA-she agrees that "services sometimes lag."

[dfwtexas]

My neurolgist is in a neurlogical center...it is only neuroligists and neurosurgeons...it is a 3 story building that has EEG, MRI, sleep study center....all self contained for all needs of people with neuroligic problems. I was referred to my neurologist by another one of my specialist because this center is one of the top centers in Dallas and has everything readily available to treat all my needs. I do not know what I would do without them! It definitely cuts out red tape to get me treatment, tests, etc.

[Loopy Lou]

I finally managed to ring my doctor's again yesterday, to be told that they still haven't got my results, and i should ring the neurologist. I ring him up (it's not actually him that answers - i haven't seen him since the 3rd march, and thats the only time i've seen him.) I talked to his secretary and she says that the results were sent to my doctors on the 7TH APRIL! I ask her to fax the results straight to my doctor's which she does.

I double checked the fax number before giving it to her, and she sent it off straightaway. Rang up the doctor's again this morning and they STILL haven't got it!

If it's fine, then i can't understand why the woman at the neurologist's clinic wouldn't tell me so. Instead i'm getting passed from pillar to post.

Granted, the health system is free, but it also means they reeeeeeaaaalllllly take their time. She also said that my EEG results hadn't come back yet at all, and it was a month ago i had that.

I'm getting frustrated and worried now.. Plus i'm sure i had a seizure last night in my sleep. Woke up with an extra hole in my cheek lining and a couple of extra bruises. Grrr....

Sorry for the rant, and thank you for your answers

[Loopy Lou]

Tacking this on the end of the thread cos i don't want to be taking up the whole forum!

Is it safe to drink on Lamatrigene? I'm on 200mg a day at the moment, and it's a friends 50th birthday on Saturday. I've not risked drinking since i started on this drug, and i never got a clear answer as to whether or not it's OK to have a couple of alcoholic drinks :P

[RobinN]

EEG should be able to be read immediately after the test.
Sometimes we have to wait for an appt to so the doctor can be paid to tell us the results.
MRI each time we were told within days of the results. Ask to see the film, and have the doctor point out what he/she is seeing. Get a copy of it on a CD so you can take it to any future office if necessary.

Personally I wouldn't drink if I were you. Mixing alcohol with medication is always not advised. Drinking alcohol with a seizure disorder.. quite silly in my eyes.
Go out and find yourself a good healthy drink that has safe ingredients and put it in a pretty glass. You can still celebrate without alcohol. No HFCS or fake sugars.. all neurotoxins.

[Loopy Lou]

Personally I wouldn't drink if I were you. Mixing alcohol with medication is always not advised. Drinking alcohol with a seizure disorder.. quite silly in my eyes.
Go out and find yourself a good healthy drink that has safe ingredients and put it in a pretty glass. You can still celebrate without alcohol. No HFCS or fake sugars.. all neurotoxins.

Yeah i figured as much about the drinks. I haven't touched alchohol at all since my first seizure. I've found a nice brand of alcohol free beer. Basically it's fizzy pop that just tastes like beer. Most of the popular brands have an alcohol free version.

I think i'll stick to that *nod*

I did ask about the results of my eeg after the guy had done it, and he wouldn't tell me/let me look. The only thing he did tell me was when i asked did i have a reaction to the flashing strobe lights, to which he replied "No, you didn't have a reaction to that.

I didn't miss the inflection at the end of that sentence

[RobinN]

No the technician is not allowed to tell you. You need to sit down with the Doc. However, there are some Neurologists that will bad mouth other Neurologists, because they are not specialists in Epilepsy.
Then there are those that are specialists that make you think that if you did not have a seizure while wired up that there is no seizure disorder. Many reasons that can happen.

Maybe they should put some MSG on the tongue too, and see who has a reaction to that. Or give them a glucose drink then test three hours later. I guess SPECT scans might be better for that. Too bad we aren't authorized to get those.

[Loopy Lou]

What is MSG? Or a SPECT scan?

I don't know these things lol

[Loopy Lou]

Argh! *pulls hair out*

I got the neurologists office to fax it to the doctor's again, rang them up today and they STILL don't have it!

Rang up the neurologists people today too and they said they've sent it 3 times, and there's nothing else they can do. I'm getting really wound up. Surely if it was fine, they would have just told me over the phone! The receptionist at the doctor's gave me the fax number again, and it's exactly the same number that i gave to the neurologist's last week.

I don't know who else to try now... Perhaps if i rang the nurse who came to see me when i was first diagnosed? Grrrr....

So much for 2-3 weeks. It's now been nearly 2 months since i had the MRI and just over a month since the EEG.

It's like banging my head against a brick wall.

Anyhoo in other news - i went out on sat night and didn't have a drink. Was funny watching everyone else getting drunk though Ach, i better go to work. And i'm all wound up too.

[epileric]

Surely if it was fine, they would have just told me over the phone!

Depending where you are the doctor might not be allowed to tell you anything over the phone, whether everything is fine or not.

It's starting to sound like you should go down yourself to pick up & deliver your file. It is your file after all & you should be allowed to access it.

[Loopy Lou]

They're only allowed to tell you what the results are over the phone if they are normal here. If there's something there, then they tell you to make an appointment.

I'll have to wait til i get the money to pay for my files now. I'm not sure how much it will be, but it was going to cost me £15 just for a letter from the doctor's, so it will probably be a fair bit for my files. Plus i'll need to get the time to go to another town to get to the hospital to get them. I'm working solidly up til saturday now, and then again up til next saturday.

I know the nurse who came to see me wrote her number on one of the booklets she gave me when she came up, so i might see if i can find it and give her a ring. I know she's been very helpful before. I'll go find the number now and give her a ring.

[Loopy Lou]

Yay!!!!!!!!!

Finally, i managed to get them! The nurse very kindly went and got my results from the neurologists office and then told me over the phone that my mri came back fine!

Oh, i'm so relieved! My EEG results still haven't come back yet, but hopefully it will be soon.

All that worrying, and it was all over nothing

*breathes sigh of relief*