Forum

I don't understand?

First of all I should mention that I haven’t had a definite diagnosis of MS yet but a scan showing lesions on my brain along with other symptoms has my neoro thinking that it is MS but I’m awaiting a lumbar puncture and blood tests to get more answers. What is currently concerning me is that I had double vision for about 4 months and it has been absent for about 6 or 7 weeks unless I am doing something overly active, in which case it flares up again. I thought that if i do have MS then the double vision would have been a relapse and that its prolonged absence would have been remitting? Today however the double vision seems to be back in full swing and I’m just a bit confused because I thought I would be ok for sometime before getting anything like this again? If I do have MS is this normal? Hope you can help me understand! Thanks.

Hi Beth, I see you are quite new to the site so welcome .

I’ve got a different type of MS (ppms) so can’t answer your question from personal experience… but I think that fatigue can be a problem with RRMS even when in remission.

Double-vision for me is a real sign of fatigue… and I’m wondering if the same for you? Sometimes fatigue doesn’t show itself as tiredness… it shows itself through other symptoms. Whenever I get double-vision I know it’s because I’m either fatigued or stressed (usually both!) and it’s time for some ‘down time’. (dizziness is also a response to fatigue for me).

So, IF you do have MS and you are currently in remission, it doesn’t mean that ALL symptoms disappear… especially if you have been pushing yourself too hard. Think about it… are you overdoing it? Stressed? (which let’s face it would be normal when waiting to see if you have MS or not).

It’s a case of listening to your body and slowing down and chilling out when your body gives you signals.

Maybe this weekend you could take some time to rest? Lie on the sofa & watch telly or read? Take a bit of time for yourself and try to let go of some of that stress.

Take care and good luck with finding some answers to what’s causing your symptoms.

Pat x

Hi Beth,

Adding to what Pat has already said - the temperature can make a difference too. A lot of people with ms find that when the weather heats up or cools down it affects how they feel.

For me it’s not so much the heat but the humidity - it hits me like a ton of bricks, increases my fatigue and other symptoms. My legs feels like I’m trying to wade through concrete and they become more painful and stiff Hot baths/showers have the same effect on me.

Other things like infections, bugs, colds and stress/anxiety can make things worse. A relapse can sometimes leave some residual symptoms - unfortunately ms is very unpredictable.

Going through all the tests is a very anxious and worrying time. Have a wind down weekend, relax, enjoy the sunshine but try to stay cool - plenty of fluids so you don’t get dehydrated.

Fingers crossed you get some answers very soon.

Debbie xx

Hi Beth,

Adding to Debbie’s comments about heat. My vision gets worse when I get hot, though the attack (optic neutitis in isolation) was signed off as recovered as it ever would be.

I sufferred from a loss of detail rather than double vision. Generally the sight in my bad eye is almost as good as ever. But when I get hot I suffer from a loss of detail in that eye.

My understanding is that even after remission there is likely to be some damage left to the myelin that stops the nerve signals leaking. Higher temperature weakens the effectiveness of the myelin even more, so getting hot causes nerve signals to leak and make symptoms worse.

I wonder, did you get hot today? It’s been quite a warm day over most of the UK.

Jon.

Hello and welcome.

Sorry you are suffering.

Our previous symptoms can exagerate, for whatever reason.

example… my first relapse badly affected my hands. The relapse passed but sometimes my hands play up again, if I am stressed or run down for example.

Hope you get clarity soon

x

I dont know how authoritatively the claim can be stated for the existence of paroxysmal symptoms with MS, particularly as I have barely encountered this term. However, assuming the claims made in this link are valid, it seems that wide ranging symptoms coming and going and not specifically tied to a relapse (including double vision) are possible with this disease.

http://ms.about.com/od/signssymptoms/a/paroxysmal_utd.htm

Thank you for getting back to me. I am quite stressed lately with everything going on and trying to understand MS, it’s very overwhelming. I have just come down with some sort of bug, sore throat etc, can that set symptoms off? My right leg has started to bother me too, it seems heavy and aches? Also should I be going to my doctors every time something like this happens to me? I honestly don’t know what I’m supposed to be doing, I feel a bit lost and sometimes think its all in my head! Thanks for all your suggestions and help, it’s really helping me to try to get a grip on understanding MS.

Hi Beth, it’s normal to wonder if it’s all in your head. I’ve been dx 4 years and still sometimes think that. It’s all tied into guilt which is normal response and also disbelief (“I can’t believe this is happening to me therefore it’s not happening and is all in my head”).

Stick to the ‘one day at a time’ mantra. Don’t think ahead of your symptoms, just deal with the symptoms as they crop up.

Yes it is normal for symptoms to worsen when you’ve caught a bug. Very common.

As for seeing GP, it’s kind of a case of gut feeling. If it feels really unusual for you and is really a problem then it is worth seeing GP. If it feels like ‘normal for MS’, or at least normal for you, then make a note of it to discuss with neuro when you next go… OR come on here and see what others think.

I know it’s hard to believe but the longer you have MS (if indeed you do get an definite dx) the more you get used to it and the more you can judge what is an MS symptom or what is unusual and needs GP attention.

Hang on in there. It will get easier.

Don’t overwhelm yourself with MS info. Remember, it is different for everyone so learning everything about it is pretty much a waste of time. IF you do have MS you will eventually become your own expert.

One day at a time… one day at a time… don’t forget hon.

Pat x

Hi Everyone, I have not been told if I have MS…However I do feel rubbish most of the time, blurred vision, fatigue which is so awful to cope with. Even having a shower takes it out of me.

My legs feel heavy and weak, so are my arms.I have not worked since Nov 2011, also stopped driving. Has anyone experienced memory loss, or not taken in what someone said to you?I sometimes feel I am not on this planet!! My husband can be talking to me, but I just dont take it in…This to me is very scary.

I am back at my Gp soon, because I am no further forward at all.

Jan

Thanks for your reassurance Pat, coming on here really helps me to feel that I’m not alone, i also have my mother in law, who I’m currently living who also has MS so she is helping me to understand too. So its common for people to think its all in their head? Because I honestly feel like a hypochondriac at the moment, I think it’s because I am more aware of what’s going on with my body now, instead of ignoring it I’ve actually been listening to it, if that makes sense. Hi Jan, have you been to the opticians? That’s where I started off in April after having double vision for 2 months and all my referrals went from them so it might be worth thinking about it, I’m not sure if the opticians can help with blurred vision or not but they gave me some prism lenses to help with my double vision so they may have something to help with your blurred vision, it’s worth a shot. As for memory loss, I also have some major issues with that at the moment but I’m new to all this and I’ve not had a definite diagnosis so I really couldn’t tell you if that’s related to MS or not. Hope you feel better, and get some answers soon too! Beth