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Suspected MS

Hello, I’m 23 and in February of this year I suddenly developed double vision whilst I was out and about. After about 6 weeks I thought it was time to get it checked out, after being referred here and there I was sent for an MRI scan which showed lesions on my brain. I saw a neurologist yesterday and she said that it was looking very similar to MS and she has reffered me for blood tests and a lumbar puncture! I’ve also suffered with tiredness for a few years and have had some really bad headaches lately. I guess what I really want to know is if there is anything else that it could be and what? I have more or less resigned myself to the idea that it is MS and although it’s quite daunting my neurologist said that it doesn’t seem very aggressive at the moment. Anything people can tell me or any reassurances would be so helpful! Thanks.

Hi Beth,

There is an outside chance it could be Hughes Syndrome; see http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=736

This does cause lesions and bad headaches’; I really hope it is as this complaint can be controlled quite easily.

George

Hi Beth, and welcome to the site

Although the neuro has mentioned MS, there is still a chance that it is any number of other conditions, some of which are easier to treat, e.g. vitamin B12 deficiency.

So try and keep an open mind, stay positive and please know that although MS is a very scary prospect, it is NOT the end of the world - the vast majority of MSers have long and happy lives.

Karen x

I wonder if my blood was tested for Hughe’s syndrome?

My MRI showed one lesion and my lumbar puncture showed signs of inflammation.

The neuro said my blood tests all came back normal.

I asked her if it had been tested for B12 and D3 deficiencies and she said it had been tested “all across the board” and all levels were normal.

I don’t know exactly what it was tested for though. Would it have included Hughe’s as well?

I think Hughes is a standard test, but better to check I would think, just in case.

Karen x

Thanks Karen.

Think I will give her secretary a bell on Monday and ask.

Thanks George, I will look in to it. However, my double vision has eased off now and is only present when I have been significantly active, I dont know if this has any relevance either way? Thank you Karen, it’s all quite strange at the minute, I feel a little like I am in limbo. dreading the lumbar puncture more than anything! I hope I get some solid answers soon but I know it’s a long process. Beth x

Don’t worry about the LP too much. There is a thread on here somewhere about the experience and many of us had a good experience.

I didn’t feel a thing and it only took a few minutes.

I did take it easy afterwards and drank plenty of water. They say to drink plenty of coke and coffee as caffiene helps to replenish lost CSF. It only takes half an hour for the body to make up the amount lost through the sample that they take during the LP procedure. Lay flat afterwards for as long as you can to prevent the LP headache.

I went to bed for about 3 hours afterwards and drank water as I didn’t want to induce a migriane by drinking coke and coffee. I was fine. No headache and no pain in the injection site.

Hope yours is a good experience too.

Best of wishes. hope it goes well.

For me, the MRI was way scarier than the LP.

I think it’s the idea of what they are doing that scares me the most and I’ve always had an issue with needles, I guess I’m going to have to get over that pretty quickly! Do you have to stay in hospital long or do they send you straight off? I like coke and coffee so that’s not an issue but I have an overactive bladder so the more I drink the more I’m going to have to get up to pee! I was ok through the MRI but I’m not claustrophobic, I hope I have the same experience as you did with my LP, thanks for the reassurance :slight_smile:

I only had to stay for about 45 minutes after my LP. She took blood samples whilst I was laying on the bed afterwards. 30 minute drive home (I didn’t drive) then bed for 3 hours and all was fine. I didn’t see the needle she used as I was on my side with my back to her. I am not bothered by needles though.

I am claustrophibc so the MRI was horrendous for me. Took two attempts. The second one I was dosed up with diazepam and they did the short scans so it was all over in about 5 minutes. That was long enough for me though. shudders

Hi, just a quick tip re drinking lots if you have bladder problems. I was told not to get up for 24 hours so had to stay in hospital and use a bed pan which was a bit tricky, so might be worth moderating intake. Xx