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In limbo

Hi, I’m new here. Basically looking for a bit of help. I’m a 23 year old female whose been having pretty bizarre symptoms. 5 weeks ago I was rushed to hospital with facial drooping on the right side, headache, confusion and weakness in arms and legs. A CT ruled out a stroke or burst aneurism immediately so after spending 16 hours on a trolly in the corridor I was finally admitted to a ward (though it was the surgical ward as no beds were available on medical) I then had a lumber puncture which completely ruled out burst aneurism but they didn’t mention it ruling out anything else. It took them three times to get the needle in apparently though I was so doped up on morphine at this point I didn’t notice. They then hooked me up with a catheter bag and fluid drip and told me they’d try and get a neurologist in to see me. 6 days later I still hadn’t seen a neurologist so basically discharged myself (they did sign the papers in the end after a bit of grumbling) Before I left though a women came to the ward and filled in a form with me to get an MRI done ( supposedly on the orders of these neuros that I still hadn’t seen) but told me if I wanted it soon I would have to stay in hospital. I stupidly still decided to be discharged and they said they would put me on the emergency waiting list and so I went home with painkillers. The next day week I still hadn’t heard anything do went back to my GP who informed me I hadn’t been put on any list to see a neurologist. She put me on the list so hopefully il be getting an MRI soon. The facial drooping is still not back to normal and i also feel really shaky, fatigued and have lots of pins and needles. I feel like my brain is full of cotton wool and keep constantly forgetting things and losing things. I can’t even function well enough up drive at the moment. Over the past couple of years iv had on and off episodes of fatigue but as I was working as an air hostess the past 2 years I put it down to jet lag. Iv had loads of accidents in past few years. Falling down stairs and breaking my ribs. Constantly twisting my ankle so I can’t wear heels. Tripping over nothing. 3 of my toenails are black at the moment from separate toe stubbing incidents. Iv been having headaches put i just put that down to the fact one of my eyes has changed in sight rapidly. My periods are irregular, my appetite up and down. Cold hands and feet with pins and needles. Tiredness from just walking up the stairs when up until October I was still working on the planes and on my feet for 16 hour days sometimes (I declined my last contract with them because I felt so physically and mentally exhausted) my gp sent me back to hospital last Friday because my face had got even weaker and he wasn’t happy with his little hammer tests and the doctor there just said he would move me up the list for an MRI and sent me home with some Amitriptyline because he thinks it’s a problem with my nerves. Basically I’m completely waffling now but I’m just so fed up with it all! Does this sound like it could be MS? The only things the doctor has told me is there’s definitely something not right (helpful!) I’m under alot of other stress now as when I was in hospital my uncle died suddenly so my heads all over the place. I’m up now in the middle of the night with what feels like growing pains in my leg and pins and needles that won’t go away. Fed up! I’m working as a receptionist at the moment but seem unable to complete the simplest of tasks and keep forgetting words. People keep asking me if I’m drink when I’m sober. I’m just sooo frustrated with it all!

Hi Bethan and welcome to the forum…

What a hard time you’ve been having! All sounds awful.

Unfortunately MS can be difficult to diagnose (dx)… but you are having all the right tests. It’s a shame the neuro didn’t see you in hospital… however, if it is MS, hopefully it will show up on your MRI.

Did they tell you anything about the result of the LP?

I do think it sounds like MS… but that doesn’t mean it is! I am not an expert by any means and there are hundreds of neurological conditions that have similar symptoms… so sorry to say but you will have to wait for MRI and results of that.

It is very frustrating waiting… believe me I know as does everyone on this site… but take heart that you are having the right tests and will hopefully get some answers soon. As you may know, there is not one single test for MS but they put a lot of info together, like a puzzle, to make a dx. The results of MRI and LP are two big bits of that puzzle.

In the meantime, rest as much as you can and try to not get too stressed out. Easier said than done I know… but whatever is wrong will probably respond well to rest and lowered stress levels.

Take care… this is a great forum for support so come on here to ask questions or for support… or to know that you are not alone in the frustrating limbo phase.

Pat x

Hello and welcome Bethan :slight_smile:

It’s a bit of a pain that you didn’t get the MRI while you were in hospital, but at least things are on track now.

To be diagnosed with MS, someone needs to have had more than one attack for the very good reason that the kind of thing you’re experiencing can be one off events, e.g. caused by an infection or virus. So, at the moment, although you can think of things in your past that might fit with MS, they aren’t terribly obviously MS so I would guess that the neuro is going to be thinking that you’ve either had one of these one off attacks or you’ve had a first attack of MS, or there is something completely different going on of course. But, as Pat has already said, the neuro will have to consider all of the different bits of the puzzle to work it out.

I know 5 weeks feels a bit like an eternity, but it is very early days for an attack like this and there is every chance that you will make an excellent recovery. Unfortunately, recovery can take a long time though (many months) and there are often days when we seem to have gone backwards. All we can do is rest lots, avoid stress, don’t overdo things, be kind to ourselves and wait for time to do its magic. (If you are struggling with work, perhaps you should consider taking more time off to recover more fully? Maybe speak to your GP about it?)

Hopefully the amitriptyline will help with your symptoms. It can be very effective at reducing sensory symptoms like pins & needles and other types of neuropathic pain. It also has a tendency to make people very drowsy which can help them to sleep, so with any luck it will help you with that too.

I hope the MRI appointment isn’t too long in coming, and that you get some answers soon. In the meantime, hang in there!

Karen x

Thanks Pat for a response. Reading my original post back I realise it doesn’t make much sense so apologys for the lack of paragraphs and the rambleling. The LP was done quite late at night, I was on high doses of morphine and on my own so it’s all a blur in my mind. All I remember Is that they kept having to stick new needles in and they said it definitely wasn’t a burst aneurism. When The next morning my sheets were covered in blood? Is that normal after an LP? Because I was in the wrong ward of a large hospital I seemed to be seeing a different doctor every day and usually not until about 5 in the evening. I also had urine retention and constipation in hospital and had to have a catheter bag and enema (during visiting hours, fun!) How long does it usually take to get an MRI done? Supposedly I am on an emergency list and my GP says it should be before beggining of may but is it worth paying private? I’m not driving at the moment as my brain feels so confused and my leg keeps jerking violently so my GP has advised against it but when I’m walking to work and back I keep falling over kerbs and tiring myself out. Thankyou so much for your kind words. I really feel alone at the moment as my family are still mourning my uncle I don’t feel it fair too put my fears about myself at their doors. Friends are helpful but as they are worrying about me so much it makes it hard to be completely honest. I just keep telling them I’m fine but then I will bang my head on a doorframe or trip over my own feet or start shaking and they start worrying all over again.

Thankyou Karen, my boss is very understanding. I’m not flying at the moment as I had a fall last summer and broke my ribs and never seemed to recover fully from it so decided to give flying a break and took a job as a chiropractic receptionist. It’s a small business so if I don’t go in I personally feel like I’m letting my boss down. He’s been doing some tests on me and said my brain is definitely misfiring and he’s also said he thinks it is a nerve problem of some sort. How long do attacks usually last? And how long do you usually have between attacks?

hi bethan

you’re going through a very rough time but you WILL feel better (soon i hope)

that droop on one side of your face sounds like bells palsy. i had it when i was 17 and then again when i was almost 50 and just before my diagnosis.

i was given thiamine tablets the first time and after a few weeks it went back to normal

thiamine is one of the B vitamins so maybe worth taking a B complex.

good luck with your appointment which i hope is soon

carole x

I don’t think paying for an MRI is necessary. Apart from the fact that good MRI scans are very expensive (maybe £500-£1000 or more for brain and upper spine), it shouldn’t be long till you get an appointment on the NHS. Relapses can last anything from 24 hours to many months, even maybe a year. I believe the average is six weeks, but I’m not sure. Time between relapses is anything from 1 month to many years (my longest is 4 years, but I’ve heard of a lot longer). Do phone the hospital to tell them that you can take a cancellation at short notice (assuming you can). Kx

hi. Sorry to hear your going through such a tough time… i was only diagonised last week so this is all new to me but after you mentioned the urine retention and jerks in the leg i thought id share as i had both those symptons. It was actual the urine retention that brought me to hospital and thanks to an amazing doctor she would not let me be discharged untill she got to the bottom of what was going on with me(i had, had a mri of brain and spine a month before and she wanted to chase the results) I had no idea the urine retention was related to ms,i honestly thought was because of the amout of alcohol i drank the nite before(which happened to be my bday) but when she said was a sympton of ms I literally broke down… my diagonised was probably quite quick as i only saw a doctor initally in janunary about problems with my legs and have a confirmed diagonised now but i no thats not the case for a lot of people… but what i will say is keep ringing the hospital about your mri as you never no when there may be a cancellation…thats what i did and also with your results appoit just keep pestering them. If you’ve had a LP i would try find out what that says and along with the mri you should hopefully have some answers soon.

my friends have been great-definately talk to yours if u can as you need all the support you can get as its a very worrying time i no :frowning:

take care huni xxx

Thanks guys for all your kind words. Still no word about my neuro appointment or MRI. I’m up again in the middle of the night with what feels like growing pains in my leg and my head feels like it’s buzzing. Really just want to get to the bottom of this so I can get on with my life. I don’t want to stop working as I feel it’s my last piece of normality I guess. Not being able to drive or do any of my normal hobbies is really hard for me. I’m supposed to be going out for drinks after work tonight but I’m on Amitriptyline and codydramol so can’t even enjoy a glass of wine to destress.

Thanks guys for all your kind words. Still no word about my neuro appointment or MRI. I’m up again in the middle of the night with what feels like growing pains in my leg and my head feels like it’s buzzing. Really just want to get to the bottom of this so I can get on with my life. I don’t want to stop working as I feel it’s my last piece of normality I guess. Not being able to drive or do any of my normal hobbies is really hard for me. I’m supposed to be going out for drinks after work tonight but I’m on Amitriptyline and codydramol so can’t even enjoy a glass of wine to destress.

Thanks guys for all your kind words. Still no word about my neuro appointment or MRI. I’m up again in the middle of the night with what feels like growing pains in my leg and my head feels like it’s buzzing. Really just want to get to the bottom of this so I can get on with my life. I don’t want to stop working as I feel it’s my last piece of normality I guess. Not being able to drive or do any of my normal hobbies is really hard for me. I’m supposed to be going out for drinks after work tonight but I’m on Amitriptyline and codydramol so can’t even enjoy a glass of wine to destress.

Thanks guys for all your kind words. Still no word about my neuro appointment or MRI. I’m up again in the middle of the night with what feels like growing pains in my leg and my head feels like it’s buzzing. Really just want to get to the bottom of this so I can get on with my life. I don’t want to stop working as I feel it’s my last piece of normality I guess. Not being able to drive or do any of my normal hobbies is really hard for me. I’m supposed to be going out for drinks after work tonight but I’m on Amitriptyline and codydramol so can’t even enjoy a glass of wine to destress.