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Hard not to feel embarrassed

Hi all Newbie here! I’m awaiting an MRI brain and spine due to on going issues and brisk reflexes and babinski(?) sign at Neuro exam. I’m still learning what these terms mean - and that they don’t necessarily mean MS but it has been suggested. The hardest thing I’m finding, is the amount of times ive been to my GP, eye casualty and A&E with some frightening symptoms - then sent away with no answers. It is mortifying. Chest pain, trouble walking, blurred and double vision in one eye being the most worrying - it’s hard not to feel like a hypo, especially when you’re asked a million questions and get some funny looks. I know what I go through on a daily basis and when I’m asked to list them all it does sound nuts, but it’s very real and really tough at times. I feel like my body is not my own and I’m so weak sometimes it’s frightening. I’m only at the beginning of figuring out what’s wrong - but some of the responses from doctors have bern disheartening- and I’ve been warned this could be a long slog. Any advice on how to deal with the knock backs and feeling like you’re not believed? Thanks in advance - it’s really not fun is it?

Hello Talulla

You are completely right, it can be a long old slog to go through all the tests for neurological disorders and getting a resolution seems a long way off and really hard going.

I know when you list all your symptoms it can feel like you’re sounding like a hypochondriac, but chances are the medical professionals you are seeing don’t think that at all. Sometimes it is just a personal feeling and you are being completely believed and looked after as best the NHS can.

And clearly, the neurologist found some evidence of things not being quite right at your neurological examination, and has referred you for MRI scans of brain and spine. So you seem to be believed there!

What you could do, is write yourself a diary or timeline, of what has happened and the symptoms you are still experiencing. Go back as far as you can remember, put some rough dates on symptoms, note how long they’ve lasted and whether they’ve entirely improved or partially. And start keeping notes of all your various symptoms regularly from now on. This will help in your neurological appointments, and may make you feel a bit more confident in your own bodily reactions. Possibly make you feel like you are a little more in control?

Stop feeling like you’re exaggerating, an imposter or a hypochondriac. Your symptoms are real (unfortunately) and you are slowly going to find out what’s caused them.

Good luck.

Sue

Sue thank you! You are absolutely right! I was feeling a bit deflated after an emergency eye exam - and coming away still blurry eyed and in pain - but none the wiser. But yes - keeping a diary is a great idea and I just have to own my symptoms and try not to feel daft because of how random they are. Hopefully the MRI appointment will be along soon and help to rule things in or out. Again, thanks your message helped a lot!

Hi Talulla Has the hospital given you any idea the time line for your MRI or are you just waiting for the letter come through the door, have you had any other tests eg lumber puncture and a blood test there is another one but I don’t know what it’s called. The double vision sucks you can’t drive and you say it is in one eye if you look up double vision they explain which kind you my have, I have a forth nerve palsy. Have you been to the eye hospital for a check up and a plastic lens to sort it out so far I have had a prism on my glasses for a year now. If I lose my glasses now I won’t be able to drive. Luckily I have the plastic prism that goes on to my old glasses as a spare ones now that I have got some new glasses. They don’t expect you to pay for new glasses straight a way as it might correct its self mine didn’t and when I went back in February they said it was fine to get the new glasses as it had been a year since I had some new ones You must be browned off with all the times you have been to the hospital or doctors and no joy. Nobody on here will think that you are hypochondriac it does sound like you are making things up but there are so many symptoms that other illnesses have the same, so much so that you have to have a great number of tests and each one takes time to do. Hopefully you will find out what you have. So welcome to limboland as it’s called here. Kay

Hi Kay Thanks for the reply! I’ve been sent for an urgent MRI but due to waiting lists I’ve not received a date as yet! That was back in November. I’ve had blood tests to check iron and B12 and a few other things - all came back ok. So far just waiting on the MRI and I guess they’ll.take it from there depending on the results. I’ve had a few odd symptoms over the years but didn’t really pay much attention! But this past year has been a bit horrible with numbness chest pain fatigue balance issues, tripping over my own feet, and getting caught short for the loo, tremors- and other niggly things here and there. I’ve had restless legs for years which is pretty horrendous now - terrible insomnia. After several trips to a&E for chest pain and spraining my ankle after my leg collapsed, coupled with a annoying hand tremor, I thought it might be time to get myself looked at lol My GP was great, referred me to a neurologist right away who referred me for the MRI. Just waiting for now but the symptoms continue and they’re so hard to talk about because they are so random! I just have to stop feeling embarrassed about that and concentrate on finding out the cause for now :slight_smile: All new to me and im grateful to have somewhere I can come and chat and not feel like a twit! Thanks again x

Hi again Taulla

Did you see neurologist and ask you to have some other tests, like a lumber puncture and blood tests. They are fine to have mine went well. Have you been writing a list of symptoms and what happened at your doctor, AE dates and times this will help the neurologist along with the MRI.

The problem is that there are so many different symptoms for different people. And so many tests to rule out different illnesses.

The MRI is very noisy and is a bit long winded but you don’t feel anything the lumber puncture you have to drink about three litres of fluid every day for a few days to help replenish the spiral fluid that they took, energy drinks full bodied cola and coffee will help keep the headache away plus you have to lay down for a couple of days, not to go back to work if possible for a few days.

The blood test, well most people have had blood tests. Have you got a date for the next appointment with the neurologist to look at your results. You don’t say whether your working or are signed off.

I know what you mean when you say that you have had a lot symptoms but they might not be MS they might be something else. It’s not hard to look at the symptoms and say it’s this or that. You will be told what you have by the neurologist as they are the only people who can say what you have.

You never know you may be on of the lucky ones who will find out what you have because sometimes it can take a while to find out what you have. In your MRI they are looking for white matter changes or legions in your brain. But there are a few other things in your blood and spinal fluid too.

This is what they call limboland where your waiting for tests results and doctor appointments. Then finally a diagnosis of what you may have or haven’t. If you read some of the threads they can tell you how long it took them to be diagnosed. There is a lot of help on this site so good luck.

Kay

If you have double vision you should see your optician. They can check quickly if there is something amiss. I went blind twice and the gp ignored it all as being too hot or too stressed. Eventually years down the line i had VEP tests which showed i had Optical Neuritis. If you were referred November you should have heard about an appointment by now i thought they had capped waiting times. I would ring and check up to make sure you havent been forgotten. Or the appointment came and you never received it. If it was urgent i am sure you should have had it by now. The more you stress the worse symptoms are. I have had some terrible scary things i know how you feel but i was ok afterwards. You need to chase that MRI. Hugs. x

ps. RESTLESS LEGS.

Take magnesium it really works. xx

Hi Kay I’m early stages with finding out what’s wrong. Have had Neuro exam and been referred for urgent MRI which is taking forever due to waiting list - but I’m going to ring in the morning to chase that up. I’m still working though I’m finding it more and more difficult and have chatted with my manager about reducing my hours - which will be tough financially. So at the minute I’m smack bang in limbo land but I’ll persevere until they figure me out lol T X

Hi - I was at eye casualty last week referred by my optician - they Did mention optic neuritis but wouldn’t confirm it and are going to see me again in 4 weeks to see if anything has changed- in the meantime I’ve to see my optician again to get a new prescription for specs. And yes the wait for my MRI has been ridiculous! I wasn’t sure how long a wait for an urgent MRI should take but my GP was annoyed but not surprised I’ve bern waiting so long. Time to get my big girl pants on and make some calls lol I take pramipexole for restless leg which has been a lifesaver - but some days are better than others - it’s a rotten thing - if you are a fellow sufferer you’ll know! Hugs to you too x

Hi Talulla,

If you read this article; written by a doctor; about his diagnosis; it will explain what things like ‘Babinski Sign’ and others are, Diagnosing Multiple Sclerosis

Good luck

George

Hi George I will do - thanks for that!