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MS without balance or sight problems?

Hi All,

I would like to know if anyone has been diagnosed with MS without their sight or balance being affected.

I have several symptoms like MS and while seeing a consultant yesterday (for bowel not neuro) he dismissed MS straight away as my sight and balance are fine.

I am having a private MRI on Monday on a 3 Tesla machine, previous scans on a 1.5 were clear. I am having this scan just for my own peace of mind really as GP, Neuro and other consultants say as the scan is clear it is not MS. (If this is clear I will give up on MS and just get on with it!)

I just want to know if what this consultant says is correct as they all seem to generalise the symptoms - do you know different?

Thanks xx

Hi Elsie,

As far as I know, there is NO MS symptom that is universal, so it’s certainly not possible to say: “You can’t have MS, because you’ve never had X…”

I had never had sight problems at the time of diagnosis (only very subtle ones since, and not picked up on tests). My balance has never been brilliant, but was not so awful that I would qualify as having anything wrong with me, on the basis of that alone. It was just at the poorer end of normal.

It is unlikely to have MS, with clear scans, and a range of consultants all feeling it’s not. However, the verdict of the bowel doctor is NOT a compelling reason why it can’t be. Not everyone presents with either sight or balance problems. It’s all down to where the lesions form. If you don’t get any anywhere that affects sight or balance, then you won’t be troubled by those problems.

Tina

x

Hello Elsie. I’ve recently been diagnosed with MS, I don’t have any sight problems…depends where the brain lesions are. I do have mobility problems though. Its possible that small lesions can be missed on some scanners. Good luck with next scan. Hope you get some resolution so you can move forward. Noreen x

Hi I also asked this question, some time ago, when I was being tested for MS.

My story goes back 15 years. My mobility soon deteriorated and spasms figured a lot in my legs. I was told I presented as typical PPMS.

I wore the probable PPMS label for a few years. Then I had a 95% diagnosis of it for 7 years.

That was ruled out and when I asked how they decided on that, I was told I would be in a worse condition than I am! I have not had any sight problems, but have had a twitch in my lower lid. I am deaf in 1 ear.

I have no mobility at all, cannot weightbear and have a suprapubic catheter, as bladder problems were severe.

My current diagnosis is;

spastic paraparesis/cause unknown. It could be genetic, but I dont know of any family with similar symptoms.

pollx

Hi Elsie,

I was diagnosed when my only problem was pins and needles in my legs which would not go away. The only balance problem was that i could not walk putting one foot slowing straight in front of the other - I’m a bit splay footed anyway. Walking normally was fine. I had had the same thing three years before and they thought it was a vitamin B12 deficiency but it went away so when I got it the second time I though it was just the same thing. Then I was sent to a neurologist - had a MRI & evoked potentials - no LP - and told I had MS. A bit of a shock to say the least.

Tina is right - there is no ‘typical’ symptoms with this - maybe a few common ones but nothing definite. BTW - the pins and needles never went away the second time. 12 years later, I still have them - 24 hours, 7 days - you get used to it though.

Good luck hun

JellyBellyKelly x

Hi Elsie

Just wondering who will be looking at your MRI results? I hope it will be a neurologist who specialises in MS. Good luck and best wishes Heather

I’m no expert as I have not been formally diagnosed as I have only had one episode, but they have told me they think I have MS as I have brain lesions. When I first went to my doctor I did mention MS and he said you can’t have it unless you have pain behind your eyes! I am angry that he could say that for me to be rushed to hospital a week later only to be told I probably have MS. I do not have sight or balance problems.

Hi All,

Thank you so much for your replies and experiences. they have been a great help.

I had my scan today and have a copy on CD. The full report will be sent to my GP and I have an appointment with her in 2 weeks.

In my last neruo appointment I was shown my scans in detail so I had a bit of an idea what to compare. He showed me a spot on my brain which he said was nothing which is still there so I know I have a similar image. Well, there is a bigger brighter white spot that is quite clear from several angles/frames together with a lot of little spots nearer the top of my brain. Not too sure about the spine as I don’t think the angle is the same but there is an area lower down that is not quite as ‘straight’ or ‘complete’ as I remember.

Not sure what to think really…just have to wait for the radiologist report. xx