Hi - I'm a newbie

Hi Everyone I’m new on here. I wanted to say Hi and wondering if anyone can give me their thoughts please. Nearly 3 weeks ago, on a Tuesday, I woke up with severe pain when moving my left eye. I thought I was coming down with flu as this is the only other time I have ever experienced this feeling, but no flu came. The pain grew worse and worse and I was pretty darn miserable. On Weds it was still there so phoned the doctor late in the afternoon just to check if I should be seen, an appointment was scheduled for Thursday am. When I woke Thursday, my usual perfect vision was not so much. The doctors referred to me to an eye hospital on Saturday and after having some tests tests there, they arranged for me to come in on the Tuesday, 3 days later, to the Neuro ward for investigation. I was seen by lots of people, had a Neuro exam, more eye tests and spoke to a nice doctor who explained that I had Optic Neuritis and at this stage there was a 50% chance I had MS just from having ON alone. My Neuro exam wasn’t great really and my history is complex. For the last 2 years I have suffered from what I called (between me and my husband as I didn’t talk to anyone else about it) Organ pain or episodes. I would go through a 2 or 3 week period of having all manner of aches and pains and then they would disappear for a couple of months. The pain in my upper left back was horrendous, I thought it was Lung pain because of it whereabouts, but there was never a cough, just pain. I would get Gall bladder pain, stabbing pains all over, neck pain, chest pain, horrendous lower back pain and a dead leg that would leave me virtually unable to walk, I still see an Osteopath every fortnight for this as I thought it was Sciatica. Last October I was admitted to hospital in excruciating pain. The doctors thought it was kidney stones as it was in my lower back and radiating to my front. I had a CT, no kidney stones there. I had an ultrasound to check for appendicitis, nothing inflamed there. I was eventually sent home, leaving the doctors scratching their head. My bloods were all fine, liver function, kidney function, blood count and no infection to be seen. When I briefly mentioned this in passing to the Neuro people on the Tues, during my exam, they asked lots of questions then excused themselves and left the room to chat to their colleagues? I know there is a possibility I have MS but I’ve been very careful not to read too many things regarding it as its sometimes easy to believe you have every symptom listed, which is true of anything you read up on. I’m sure I could self diagnose myself with a million issues. The only website I have been to is the MS Society which I have found very informative. My worry is, the day before I got ON, my right shoulder became painful and my arm felt slightly dead, not totally. The ON came the next day and lasted around 5 days although my sight still isn’t perfect, I feel like I’m wearing very light shades over one eye. But what worried me even more was that over the past week or so, my speech has been difficult. I find it hard to pronounce words and to find the correct words so I’ll say things like “oh look at that dog” when I’m pointing to a bird. I can’t really talk to anyone about this as the usual response is “You are stressed, everyone does that” and that may well be the case…but it doesn’t EVER happen to me! You know your own body and your own mind, you know what’s usual and what’s not. The pinnacle came on Monday when I stood in the Post Office, writing my Mother in Laws address on a jiffy to send her birthday present. Instead of writing her address, I wrote my one from 10 years ago including postcode. No big deal I realise, except we have moved 13 times so I don’t remember all my addresses but the worst part was, I had absolutely no recollection on of MIL’s address, none and I’m the one in our family with the photographic memory. I called my husband, no signal, I called MIL, no answer. I proceeded to burst into tears as I felt so helpless. This isn’t me! I know people forget stuff, but I’m 37 years old, I have 4 kids and apart from pain, my mind is always 110% on the ball, always. I’ve never got mixed up with words, in fact I’m in the middle of writing a book. Yesterday I woke up and felt like my body was full of lead. I stayed out of the sun but I couldn’t move all day. Trying to do the most small task actually made my limbs ache and burn, like loading the washing machine, or stirring a pot of pasta sauce. Today I woke up feeling better but this evening came over with horrendous chest pains in a place I’ve never had them before, around my right breast, had it been on the other side I would have sworn I was having a heart attack. They actually started in my neck and worked down. My ‘episodes’ seem to have picked up pace of late. I was telling my mum only recently, in a humerous way, that when relaxing; writing my book or looking through my iPad - my legs and arms kick out of their own accord, like someone has hit them with a reflex hammer and terrible cramp in the souls of my feet. The other thing I notice is constant dizziness, when changing position from doing anything - getting in my car, getting out my car, standing up, sitting down. Even when I’m leaning over a worktop or sitting perfectly still, I’m dizzy with black flashing infront of my eyes? Very odd. Anyway, I guess I just wanted to tell my story to people out there who may or may not relate to any of these thing, instead of friends putting it down to stress or tiredness or the heat. I know me, I know how I react under all these things and its not like this. I pay attention to my body and always have but the one thing I gave up doing long ago was going to the doctors as it gets me nowhere. It just so happens that I seem to be in the system now because of the ON, not because of my myriad of vague complaints/symptoms. Any responses welcome D x

Hi D and welcome to the forum…

I’m so sorry you’ve had to wait for a reply. We seem very short of people at the moment and the hot weather isn’t helping.

You really have been through the mill hon! Very very hard for you.

A few questions:

  1. Have you had an MRI of your brain, or are you waiting for an MRI of your brain?

  2. Have you had a lumbar puncture, or are you waiting for a lumbar puncture?

  3. Have you another appointment scheduled with the neurologist?

Some of your symptoms do seem very MS-like and I’m not surprised the neuro said 50% chance of MS. But to find out if it IS MS you need to have an MRI and sometimes a lumbar puncture.

There are hundreds of conditions that have symptoms similar to MS, some are neurological, many can be treated quite easily… but at this stage, considering your symptoms and what the neuro has said, I think it possible you are looking at MS. But those tests are necessary, so let me know what they have told you will happen next.

IF you do have MS there are a few things to keep in mind. MS is NOT a terminal illness. With drug therapy, most people with MS can live a fairly normal life… work, relationships, babies, holidays, etc etc etc. Even when MS has more of an impact on our lives, life is still well worth living.

Also, new treatments are coming along all the time and for the first time ever they are talking about a cure. So the future for people with MS is a very positive one.

Get back to me hon with answers to those questions… and hang on in there. At least now you have seen a neuro it sounds as if you are on track to find out exactly what is causing all of these symptoms.

I’m glad your husband is being supportive. That makes all the difference. Don’t hold your feeling in… it doesn’t help. If you feel you want to talk to someone else… someone less involved… phone the Helpline, number at bottom of page. It doesn’t have to be a huge cry for HELP!!! but can just be a chat to help you open up about how you are feeling.

‘Speak’ soon, in meantime, take care and get all the rest you can. It helps.

Pat x

Hello D and welcome, As Pat has said there is a shortage of people at the moment, we’re all knocked out by the weather. I go along with what Pat has suggested a MRI, VEP but you need to see a MS neuro who can get all these tests done for you. You have been through the mill and you’ve come to the right place as there are lots of people to help answer your questions. In the mean time I send you (((((HUGS))))) and remember you’re not on your own. Janet x

Hi and welcome. It’s so frustrating when friends and relatives say they know how you feel and put it all down to things that you know is not! Hope you get all the tests quickly. Like you, I’m in limbo land. Haven’t a clue what is wrong, just know that it’s really not right. It has taken over 2 years for my doc to refer me to the neuro and am finally seeing one in about 2 weeks time. Hope you find the advice you need on this forum. You’re definitely not alone by coming on here

Sharon x