Forum

In The Dark and Very Scared

Hi everyone, I’m based in the UK and I hope it’s ok for me to post in here. Yesterday I slogged my guts on via a LiveJournal entry which I will copy and paste into here so you have some idea of what I’m feeling right now. I’d like to start however by explaining the symptoms that I’ve had over the years that may or may not be a factor, as well as establishing some information:

  • I have at least 3 lesions in my brain - I don’t know where they are or how big they are (and I don’t know exactly how many lesions there are, I’ve only been told “at least 3”). My first and only MRI was done around 11th September of this year.
  • In the past, the only symptoms I’ve ever had were pain in my knees; a nurse said this was because of my weight (I am overweight though I have lost 3 stone since) and I received physiotherapy for a while but the pain still comes and goes at random. I wore glasses as a child for about 3 years and again earlier this year for my computer work.
  • There is no-one in my family with MS.
  • I have so far had blood taken 3 times and a lumbar puncture done - Elevated protein levels were found along with a “demyelinating condition”, So far, no infection has been mentioned but I am currently running a fever and some redness has been found in my throat - I’ve just been told to take paracetamol (haven’t been told how long for).
  • Although it was mentioned when I was in hospital between 11th September and 16th September, I haven’t yet received an MRI with contrast and no appointment has been made for one. Originally, my doctor didn’t want to see me again until January 2014 unless I experienced other symptoms (which I have!) so I had to beg for an earlier appointment, which I’m having this Thursday.
  • MS, Lupus, Vasculitus and various other diseases have been mentioned to me, but as of yet nothing has been diagnosed.

Now I will tell my story, I apologise but this is a long one as I feel I’ve got a lot I need to let out. I’m sorry if I upset or offend anyone, please believe me when I say it is not my intention, I just want help really:

"First journal entry since getting married, I wish I could type this in a positive light but, in all honesty, I can’t. Because less than 24 hours after my wedding, my world had been turned upside down. I want to first of all say that this entry will be a long one, and the reason I am doing this is not only to help myself, but also so everyone know’s what’s going on in my head - I’m sorry if anything I say on here is offensive or upsetting, but I need to say this:

Waking up on Sunday 8th September (the day after I got married) with only half of my eyesight was fairly scary. I managed to stick it through to Monday when I realised this was a problem, and sought the help of my optician. However, a simple check on my eyesight and finding no peripheral vision in my right-hand side then turned into a referral to the hospital and, on Wednesday 11th September, admittance for a suspected stroke. At that time, I was sat there in complete denial that I’d had a stroke, as I wasn’t showing any of the normal signs of one (no slurred speech, no face drooping, etc) and so, in a ward full of stroke victims and advanced Alzheimers sufferers, I was adamant that I hadn’t had a stroke. I can remember so many questions being asked about my mobility, my balance, my family history, and by several doctors and med-students, One night’s stay turned into 4 nights altogether, during which I had several vials of blood taken, a CT Scan, an MRI and a chest X-ray. By that time, my vision had started to get better by itself and so I was hopeful for a swift diagnosis and a treatment plan but, on Thursday 12th September, my MRI found some lesions on the brain. I cried, in both surprise and also fear as I started assuming that this was my end coming. The hospital’s explanation of “just an abnormality in the brain” was given to me, along with talk that blood was taken to conduct further tests, and someone would be in contact with me soon. I tried my damnedest to stay hopeful all the time, I’d been signed off sick from work as I couldn’t see a heck of a lot and was relying on daytime TV to pass the time. However, weeks came and went and, despite my chasing, the results hadn’t been given in regards to my blood.

The situation changed again on Wednesday 9th October, when I woke up and suddenly found my left leg was numb and tingling. I thought I had just trapped a nerve or banged it somehow so I stuck with it until Friday 11th October, when I had started freaking out. I remembered from a conversation with a neurologist that there was a suspicion that it could be MS but, because the lesions weren’t typical for MS and I’d only had one attack, it was unlikely to be MS. I didn’t have a lot of knowledge about MS at the time other than a brief Family Guy sketch involving Peter Griffin’s high school bully, so I was pretty much in the dark. With a sudden numb leg I was seriously getting worried to the point that I couldn’t sleep, could hardly eat and was thinking all kind of things. I also started doing an incredibly stupid thing…

Googling things

I Googled MS, I Googled numb leg, I Googled “can stress cause numbness” and other things like “can stress cause loss of sight” and read up all kind of stuff. I kept finding results that mentioned various diagnoses - some good and some bad. However, despite getting a good report Thursday that my sight was coming back by itself, I spent every night afraid to go to sleep because I thought I would die in my sleep. I had even been put on Cetalopran anti-depressants because the doctor thought I was a “worrier”. So where am I right now?

I am a mess, an absolute mess, I’ve had a doctor tell me I’m not dying but that hasn’t changed how I think. I keep thinking I have MS and my life is over DESPITE looking up various stories about MS sufferers, how they go on to live a normal life and how advanced medicine to treat MS is. Heck, there was even an article about how close they are to a fully proven treatment that stops all relapses permanently. But, my brain is saying I have MS despite me not having an official diagnosis. To make matters worse, when I went to Great Western Hospital’s Urgent Care center with my numb leg they came across a letter from the neurologist to my GP saying that they had identified a “demyelenating condition”. The letter said pretty much nothing else, other than because this was a single episode it was isolated. No mention of treatment, no mention of further testing - that was it. Course, I Googled this and found that a demyelenating condition is not curable - so I freaked out again, At this current point in time, I am believing the worst is happening to me and I’m going to die because of it. I’ve had so many fits of crying and panic attacks, so many questions asked to Nick, my brother and my Mum that I suspect it’s driving them crazy. But I am so frightened by what this could be, and what this could mean for me an my life. I know what is happening to me is pale in comparison to some people but I still can’t help but think the worst every minute of every day. I’m also thinking that whatever I’ve got is getting worse - I think my eyesight is getting worse because I’ve yet to sudden have a “flick” and the vision would be perfect again, and my left leg is still numb. As well as that, I also have a fever and some of my hearing has gone, Finally, I’m thinking that the palpitations in my chest and the dizziness in my head is part of the problem but may for all I know be a side affect of my anti-depressants.

My Mum has told me that this could all be stress - part of me REALLY wants to believe here but I can’t think it’s that easy. The pessimist in me who is currently thinking I’m going to die tonight will not allow me to think positive about this at all, despite trying my hardest to be all “well at least I’m alive, at least I can still walk etc”. I have moments where I try and yell at myself for thinking all negative, to try and sway my mind into positive thinking but it doesn’t work. What’s even worse is that, despite me calling my neurologist and telling him what happened, he wanted to not see me until January 2014! I had to call again and speak to his receptionist to schedule an appointment for this Thursday (which I am now fearing the worst for). Along with the palpitations I’m having and the dizziness I’ve all but given up on life I feel. SUCH A HUGE PART OF ME wants to think that this will go away on its own, or I’ll have to take a pill every day for the rest of my life to manage it but I’ll live a normal life, and I can’t. I am grateful that I am married, I’m grateful that I have a home and I have a family that loves me, but I can’t enjoy these positive things in my current state.I just want my sight back, and the numbness from my leg gone - I’m on no medication other than anti-depressants, sleeping pills because I can’t sleep and paracetamol to bring down a fever I have. I’ve been given no diagnosis yet and no treatment; I know a diagnosis can take some time but with all of the questions I’ve been asked, blood I’ve given and calls I’ve made I would really like some kind of answer, I suspect that getting the answer will help with getting rid of my depression. I’m impatient, but I want to start living a married life and plan a child! I’ve never felt so lost in all my life… especially as I have only been able to open up to a general GP in the Urgent Care centre and have not been able to discuss this at length by a neurologist or my GP yet. The good news is, I don’t have cancer…"

Hello there. I can understand why you are so frightened, going through all this. I’m a complementary therapist but not a trained counsellor. Had you come to me and told me all this, I’d be handing you a card right now to see a lovely counsellor that I know. Would you be open to looking for one in your area? I’m on the road to diagnosis myself. It is really important to ask for help when you need it but equally important to help yourself. The best way I’ve found for me personally is to actively tell myself positive things and nurture feeling good. Yesterday I was curled up on the sofa, feeling quite exhausted. I knew to take some time out for myself, reach out for help (love this forum!) and be kind and gentle with myself. I’ve been through trauma and depression. One phrase that helped me climb out of the pit was ‘All is well. Out of this situation only good will come. I am safe.’ If I were you, I’d start the move toward the positive by changing your username. Try something more neutral. I understand that you are describing yourself but others may not be comfortable calling you by it. I sincerely wish you well :heart:

It does sounds like alot of your symptoms are down to panic, fear and stress. I’m not debating that there is something else going on with the numb leg and sight issues but I would say the rest is big time anxiety. I’ve had all of it, not sleeping, heart palpitations, figity, big time paranoia, dizzy spells, jumping at everything I feel in my body, checking myself for things. It’s major major panic attacks. Also if you have recently started an anti depressant they can actually make the panic worse before you start to feel a big better. It may be best off it a doctor can prescribe you a tablet to ease your nerves a bit. Take deep breaths, try and relax and try and keep yourself busy xxx

I really do know how scary all the weird symptoms can be - I was hospitalised for three weeks and I remember the long lonely nights with my mind racing, but it is unlikely that you are dying from what you have said (you have had all the tests to check for this last month). As the others have said many of your symptoms could be caused or exacerbated by stress so as hard as it is you should try to concentrate on being kinder to yourself and preparing for your appointment. Write down your symptoms in the order of importance and any questions you have. It does sound as if you weren’t told much in September. As you say there are lots of things that could account for your symptoms (I have been diagnosed with clinically isolated syndrome) but you need to talk to your neurologist about your previous results and any possible future tests needed. Good luck with getting a diagnosis.

Thank you everyone, it’s nice to talk to people who are going through it themselves. Currently, I’m feeling a strange sensation I can only drescibe as “feeling drunk or drugged” and that’s freaking me out. I’ve no idea if this is a side effect of the Zopiclone sleeping tablets or the Cetalopran anti-depresants, or possibly an attack? I’m currently thinking every strange feeling I’m having and change in my vision/walking/anything really, is MS-related. Why do I keep doing this to myself?

P.S the nickname isn’t anything negative, it’s my old gamertag from Guildwars.

Barely slept last night. When will life be normal again?

I have bad nights too as my symptoms are particularly bad at night. It is so hard not to over analyse every twitch and ache. I can’t count the number of times I have cried myself to sleep being scared and in pain, but it is not helpful. I have recently started mediation to stop this cycle of worry and pain and it is helping me.

Neuro appointment is tomorrow - I’m going to give him a full list of all the symptoms I’ve had and when they happened. Had a good cry today and even made my Mum cry. She is still adamant this isn’t MS and I really want to believe her…

Good luck tomorrow. Let us know how you get on.

Good luck xx

Appointment with the Neuro today - CIS has been diagnosed, likely to be MS but cannot be confirmed unless I have another attack. This means that, either nothing else happens ever again and I go on as normal, or I am diagnosed with MS after a second attack and I go onto treatment. Doctor says my other symptoms are likely due to stress and depression. MS isn’t yet curable, but it is very manageable and a lot of research is being focused on it to find a preventative or permanent cure. The last few weeks have been a seriously emotional rollercoaster but my fingers are crossed that this will all disappear and I can get on with my life. If it is MS, I know from some good sources I can still live my life as I want too. I just now have to get over my depression and move forward. Follow up MRI is in Janaury - fingers crossed the lesions from the initial MRI go away and leave me alone!

Big {hug} for you! You sound much more positive now :slight_smile: Wishing you all the best :heart:

So I had my first Zopiclone-free night yesterday, and didn’t sleep a wink. Very angry, was hoping that sleep would be normal but I guess it can take time for my body to adjust? My brain keep overthinking things, I can’t drift off and I’m really trying to get back to normal. I’m sat here right now feeling my eyesight is now getting worse! WHEN WILL THIS STOP!? :frowning: :frowning: :frowning:

The warm tingly feelings I’ve been having are now turning into cold feelings - My left hand is very cold but my right hand is fine, and my left calf muscle is cold along with an area on the left-hand side of my back. This is so horrible

Right, I am getting better so I’m going to nip this in the bud to help my recovery - I’ve made myself so ill by simply letting this get to me and damnit I refuse to let this get to me no matter what the future holds. Thank you to all who have given advice, you have been a wonderful help :slight_smile: :slight_smile:

You are welcome, people here have really helped me too. I hope you continue to stay positive and your symptoms improve.

hi

you need a mantra to say to yourself “i am a strong woman, i am loved, i am safe, everything will be alright”

you can do it. lots of us here have done it.

take care

carole x

Hello,

I can totally identify with your story. Ive been ill for 2 1/2 yrs with chronic symptoms and 5 clear scans. Its extremely hard to keep a positive outlook when u r the one trapped in your body. I too got very anxious and still do - I’m not sure if this is helpful but the shrink has put me on a brilliant drug (quetiapine) which has really chilled me out. I looked up what it was for an freaked out initially about taking it - for bipolar, schizerfrenica (spelling?) but also for severe anxeity and OCD. I suppose constantly being in a vicious worry loop is a bit like ocd. Anyway it’s really helped me move fwd with my life and not freak out everyday about the symptoms. Much more sociable these days! Perhaps its worth speaking to your dr about. I’m also on citalapram due to the fact the whole nightmare situation made me depressed. Ha I think even the dali lama would pop some pills if he was in our position! Also another tip is to go to a mindfullness class/meditation. V helpful to get control of ones feelings. An amazing book is Mindfulness - finding peace in a frantic world by Mark Williams. Also comes with a disc with meditations - highly recommend it.

Hello,

I can totally identify with your story. Ive been ill for 2 1/2 yrs with chronic symptoms and 5 clear scans. Its extremely hard to keep a positive outlook when u r the one trapped in your body. I too got very anxious and still do - I’m not sure if this is helpful but the shrink has put me on a brilliant drug (quetiapine) which has really chilled me out. I looked up what it was for an freaked out initially about taking it - for bipolar, schizerfrenica (spelling?) but also for severe anxeity and OCD. I suppose constantly being in a vicious worry loop is a bit like ocd. Anyway it’s really helped me move fwd with my life and not freak out everyday about the symptoms. Much more sociable these days! Perhaps its worth speaking to your dr about. I’m also on citalapram due to the fact the whole nightmare situation made me depressed. Ha I think even the dali lama would pop some pills if he was in our position! Also another tip is to go to a mindfullness class/meditation. V helpful to get control of ones feelings. An amazing book is Mindfulness - finding peace in a frantic world by Mark Williams. Also comes with a disc with meditations - highly recommend it.