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Uncertain??

Hello Everyone,

This is my first post, I have not been diagnosed with MS but my head is telling me I may have it. I have to wait a few weeks for my Neurology appointment and feel I need to at least try and ask some qualified people?

My issues came to light really 2 months ago where I had a really blurry eyes and felt the need to go and see the doctor. After eye test and then a trip to the eye specialist I was referred for an MRI as I failed the peripheral view test. At the time I did the worst thing a tried looking up potential issues on the internet and MS came up in a lot of the results. The more I read the mre I associated with other symptoms.

For the past 3 months at least I have had real issues with my legs, for the most part they feel like jelly nearly all the time I feel like I have forgotten how to walk my balance is all over the place. if i try to run i just fall over as they give way. When I tackle the stairs i always struggle, unless I am truly concentrating I will not lift my legs high enough and clip the top of the step.

Lately I have had trouble urinating, I feel the urget to go but either will not or trickle very slowly. Also had to get the blue pill for the bedroom as I have been struggling to keep an erection.

But the biggest clue I have had is my MRI results as it shows that I have some demyelination of my nerves. The Eye doctors didn’t really elaborate on what it maybe and that he will refer me to neurology so now I’m waiting for that. in the mean time I really need to put it out there and just try and get someone to say I might be thinking right?

Any responses appreciated

You could be right, but your symptoms could also point to lots of other things too, not necessarily MS. The only person that can give you answers is a neuro, & then only when they have all the test results in front of them. MS is notoriously dificult to diagnose, so try not to expect things to happen quickly. Sorry if this isn’t what you wanted to hear.

Rosina

As Rosina said, MS is very difficult to diagnose and also keep in mind that it might not be MS. It will take a while for the neuro to give you the answer because they need to be sure of what you have. People do get misdiagnosed and can find out years later they have something completely different!

I would suggest that you take it easy and don’t exert yourself too much. Remember that it is a lot easier for your body to recover from anything if you get plenty of rest and drink fluids - sounds very basic and ‘old’ I know but its true!

I have RRMS and in my experience, I have had similar ‘episodes’ to what you describe - vision & ‘jelly legs’ (I’ve had them in the past and got them now as well!) but (don’t read on if you don’t want to be nervous or worried) it took 2 years, 2 MRI’s and lots of hospital visits with doctors scratching their heads for me to get my diagnosis so unfortunately you are just going to have to be patient for the moment.

Red x

I know it is a bit of an old post but thought I would update it. I saw neurology last week and the doctor all but confirmed that i have MS. My previous MRI also showed issues at the top of my spine. I now have another MRI booked for both brain and spine. Following that i now have to go for a lumbar pucture (not looking forward to it), the doctor said he expects it to then be confirmed.

Since my first post my legs are worse after walking for say 20 minutes they will basically stop working. We went to Alton Towers at the weekend and luckily I borrowed a wheelchair from the elderly lady upstairs. I guess I am going to have to get used to that.

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Hi, so it seems you may well have MS, it’s not all doom & gloom though. Once your neuro has confirmed your diagnosis he may talk to you about DMD’s & how they might reduce the amount & severity of any future symptoms.

Try not to worry about the LP, when I’ve had mine I can honestly say that I felt no pain, just a bit of discomfort.

You may not always need to use a wheelchair, but if at times it helps you, that’s not too bad, is it? Looking on the bright side, you might be sent to the front of the queue on your next visit to Alton Towers!

Good luck with everything & keep in touch with everyone on here, we understand exactly what you’re going through

Rosina x

Hello Everyone,

Thought I would update again. I think it helps me to put it out there to people who know what i am talking about.

So although not 100% confirmed diagnosis, I have had my 1st MS Nurse appointment which was arranged by the Neuro (again I feel they are pretty sure I have MS without giving me a letter to say so). I was given the steroid treatment to of which I probably wont feel the affects of yet.

I have had another MRI this time both Head and Spine. I also had my LP on Monday which thankfully was pretty painless. Must say tho my back has been quite sore since but more likely my fault as I wont rest.

My next Neuro app isn’t until March but I am hoping I may get a diagnosis before then, the not knowing for sure is a killer.

One thing I have struggled with a bit is how peoples attitude have now changed towards me, since I have told people what the docs are pretty sure I have it is almost as if I have a death sentence, my Mum broke down!! I wonder if perhaps I still have not grasped what MS is and how it is probably going to affect in the future. I keep thinking at some point I will get a wake up call have a massive cry but it hasn’t happened yet. I tend to encourage people to take the mickey out of me and the fact I permanently walk like I’m drunk.

Anyway that’s enough of me for now. I will update again once I know more :slight_smile:

What you have said has taken me straight back to that weird few months when I knew that it was probably MS but didn’t know for sure. Looking back, I think it was helpful that it happened that way; it gave me a chance to get some of the big mental adjustments out of the way while there was still uncertainty. So when the formal dx came, there were no surprises. There isn’t any nice way to learn that you have (or probably have) MS, but that probably isn’t the worst.

People react to news in line with what they know or think they know about the condition, what their temperament is (optimistic or pessimistic), what they think you need from them (do they think that you want cheerful encouragement? a shoulder to cry oh? sympathy?) and what their relationship is to you. It is pretty much universal in the case of mothers that that last component overrides everything else by a factor of 10. You are her child, you are in trouble, she can’t fix it and she is devastated. That might not be a very helpful response, but there it is. One of the main challenges for the person with (or possibly with) MS is dealing with the reactions of those who love them very much and who have their own painful battles to fight when struggling to deal with the news. Try to be patient.

As for your own reaction, well, there are no rules, and there isn’t a ‘right way’. You might take yourself by surprise now and again when sudden strong feelings come upon you, maybe when you least expect them, or you find yourself reacting to perfectly normal things in an uncharacteristic way. Or you might be so cool and calm that you start to worry about you coolness and calm and start thinking that you’re missing something… Don’t worry about any of that. All I would suggest is that you just take it as it comes and do not try to school yourself into reacting this way or that. However you are reacting is the best way for you - you will find that you can trust your instincts and that you are better at this than you realize.

Good luck with it all.

Alison

I have signs and symptoms and they are looking into what I can take for MS and inflammatory arthritis. The reason why I am posting here is because of the reactions. When I was told of the MRI spots. Much more than expected in someone my age in an MS pattern. I had been in and out of hospital twice in a few months and because I was told it was a functional disorder I kept working even though I had become blind in one eye and was struggling to think and walk. The phone call scared me at first because of the autoimune disorders I have already and what my family will have to put up with. After 2 weeks of resting and waiting for Neuro appoinment, I returned to work. A few days later someone was talking about my time off and her comment was “oh yeah you were off because you thought you had MS” I had told them at work because I was far from mentally able to do my job and have been taken off line management reports etc, basically anything that can make me stressed. That was offered by CEO not because I thought of it, but yes, I jumped at it! Going back to the oh yes you thought you had Ms statement to other people asking if I am getting counselling for everything I am going through…health in general. Really it does depend on who you speak to!

joanne

People tend to run true to form, I find. I bet that you already knew that she was a horrible cow!

Alison

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Alison is right - people do, indeed, run true to form, and you will quite probably find out who your real friends are too.

I have an idiot boss who keeps asking “Are you all fixed and better now?” and who thinks I no longer have the mental capacity to do the simplest of jobs… (self-control, self-control, deep breaths - count slowly to 1,000).

I also have Taekwondo Instructors/fellow practitioners who are determined that I will get my Black Belt (several gradings away yet) and who are constantly thinking of ways in which I can achieve this without over-heating/over-tiring myself, whilst still putting in as much effort physically and mentally as possible…cue several, super-cute tinies in TKD kit chanting “Mustn’t do it, Mustn’t do it” if I demonstrate correct push-up position (which I must not do ).

Yes - you’ll lose some ‘friends’ - but then, you’ll gain new ones/find out that some you had were better than you thought they were, and any you lose, well, it’s their loss.

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Hello all, so I guess this will be my last post of this topic as I can no longer say I am uncertain. My MS Nurse called me yesterday and advised that the Neuro had checked my latest MRI and also LP result and it does clarify that I indeed have MS. I asked what type they thought and was told RRMS although she did not seem too confident on that. Hopefully I may get to know some of you a little better a i now begin my journey of living with MS.

Thanks to those who replied while I was waiting to know for sure (that’s the killer)

Sorry you’ve joined the club no one wants to join. Hang on in there.

Alison

Well, at least you have your diagnosis & limboland is no more!

Remember that everyone on here understands what you’re going through, so keep in touch.

Good luck

Rosina x

I am glad you have an answer. I kinda have but waiting for the definite diagnosis. All the signs and symptoms but because of arthritis Biologics it has held up the decision. But GPS says its just a matter of waiting for them to come back to me.

Thank you re my post…horrible cow fits her well…do you know her lol i had a good giggle there! She always plays the ill, hard done by person who is ALWAYS busy, which makes it seem that the rest of us do nothing. Thankfully my line manager is good. They are over compensating with the HR meetings. I get one every 3 months!! My was best mate, has a bad back so obviously my psoriasis arthritis, (all joints including spine) and MS is nothing in comparison to her so she has been put on the back burner until my patience returns!

I am orange belt karate but had to give it up because I realised my judo falls were not wrong, it was the joints. I was very sporty and was sad to give it up! So big respect for the taekwondo!!!

Many thanks ladies you have put a big smile on my face x

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