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Possible second attack

I can’t completely remember how my symptoms started in January. I think I started to feel lightheaded a few times in a week, I would be in work then find I was unable to concentrate, I’d start to feel hot, I’d feel weak and like my legs were unable to support me. Over the next couple of weeks my symptoms began to develop to numbness/strange cold feeling in my cheeks, my right hand and part of my right leg and foot. I experienced pressure on top of my head, as if someone was pushing down on me, and some pressure at the back of my head on both sides. When I was just at home pottering around things wouldn’t be as bad, but if I were to go out or go to work I’d feel lightheaded and just quite spaced out. I could walk fine, but it would feel very out of body and like I wasn’t really controlling my legs. I ended up being signed off work for 3 weeks while I recovered. I have private health insurance with work, so saw a neurologist a week later who sent me for an MRI scan. I thought I probably just had a virus, then I went to get my results and was pretty shocked to be told there were 6 white spots on my brain. I was so taken aback I didn’t really ask any questions! The neurologist told me he’d expect one for every 10 years of my life, I’m 26, so 6 was more. He said that there were three options, they could be normal for me, they could be due to a virus but he didn’t think so due to the distribution, or they could be something else. I asked what the ‘something else’ could be, and he just said we would cross that bridge when we come to it. He said he wanted to send me for a lumbar puncture and another MRI in 6 months. He also said that he thought if I just waited we wouldn’t miss anything by just having another MRI in 6 months, so I said I’d prefer to do that due to some other things going on at the time. They also did a blood test while I was there, and I received a letter in the post a week later saying my Vitamin B12 was low and so he no longer recommended a lumbar puncture anyway, I should start B12 injections and go back in 6 months. My GP had also found that I was Vitamin D deficient, so I started supplements for that too. I had been feeling a lot better, back to normal, until this week. I’m back to having the pressure on the top of my head, dulled sensitivity in my right side, I had problems gripping a glass yesterday, back to feeling spaced out when walking. I’ve got a follow up appointment with the neurologist in 2 weeks time, before my second MRI. But I’ve gone from thinking I was better to being terrified I might actually have MS :(. I don’t know if it’s also worth mentioning that during this time I also cut gluten out of my diet about 95% of the time, I’m not celiac but I was testing to see if I had gluten sensitivity after 10 years of being told I have IBS. In the last week or so I was fed up and cheated a bit, so I’m not sure if that could be related.

If your symptoms are the same as last time, then I would think there’s a good chance that it is a pseudo-relapse rather than a real relapse. Pseudo relapses can be caused by lots of things, including worry and stress, viruses and infections so it’s possible that the looming neuro appointment has set it off or that perhaps you have an asymptomatic urinary tract infection (have you been going to the loo more than normal perhaps?) or you are coming down with a cold or another virus.

I know that some digestive conditions can cause neurological symptoms so I assume that it’s also possible that at least some of your original symptoms were due to a gluten intolerance and by cheating a bit you have set them off again. Maybe be “good” again and see what happens? Not the best of tests as neurology isn’t as simple as that, but it might give you more of an idea what might be going on.

If any of your symptoms are different, then I would think that it’s more likely to be a relapse, but it’s really a question for the neuro as I’m just semi-educatedly guessing!

If it is another relapse, don’t forget that you came out of the last one well so there’s every reason to expect that you’ll come out of this one well too. Hopefully it’s just a cold starting that’s causing a bit of temporary havoc though.

Karen x

Thanks for your reply. Sometimes it is helpful to get another perspective, especially as it’s so easy to wind yourself up when you’re worrying about your health. I am stressed at the moment because I’m about to change jobs and move to London but there have been some negotiation problems which have been getting me down. I wouldn’t say I’ve been going the loo more but I have UTIs reasonably regularly. I don’t drink enough water and was told by my cardiologist recently I need to double my fluid intake and increase my salt. I am trying to do that, but maybe the weather being warmer means I need to drink even more. I saw my GP yesterday and asked her to test for a UTI, but she said without symptoms there was no point. Apparently gluten sensitivity is known to cause neurological issues, so I’ve gone back to 100% gluten free, no cheating, as of today. Supposedly if you reintroduce it can make them worse than they were before, which I guess makes sense if your body has bad a break from it. I don’t think I have any new symptoms this time, and they aren’t as bad as they were last time yet either. Hopefully they might clear up in a few days. Do you think it’s worth having an LP? Or just waiting for the second MRI? I assume they look for the differences between the scans to see if there are more/larger white spots?

A second MRI is mainly to look for new lesions because new lesions mean a new attack, even in the absence of symptoms, and that can be critical for diagnosis.

I think I’d wait for the second MRI and then make a decision about the LP if I were you. That depends on your current symptoms though - if they get worse, then the neuro may decide not to wait.

It sounds like you have a heck of a lot going on so it’s not terribly surprising that you are having some symptoms. Hopefully it will improve loads once you’ve finished your move and get settled in.

Kx

I just wanted to give a bit of an update and maybe get some advice following my earlier posts. I found the information Karen gave really helpful and just talking about it helped to ease my mind. I still have some ‘symptoms’ but they are much less that last time. Now I mainly just have a slightly spaced out feeling and some problems concentrating a couple of days a week, but no numbness or any of the other symptoms and what I do have comes and goes. I have noticed that I can be sensitive to sudden loud noises, or sudden movement and feel a bit dizzy for a few seconds but then this goes. I went back to my neurologist, I think mentioned above I was going to, and he said he thought it would be legacy from last time and wanted to do a lumbar puncture. I got a call this afternoon to tell me my appointment is tomorrow at 11am. So this was a bit of a shock! I move to London on Sunday, and part of me wants to get this done with while I’m still here, and part of me worries I’ll end up with a ridiculous headache and not able to go to work next week. Can anyone give me more info about the chances of that happening? I feel like I don’t really understand how MS works. Would my symptoms come and go like this? Kind of have them a few days a week, then none, then back again? Since my last posts it’s been established my jaw doesn’t close properly and I’ve noticed I’m grinding/clenching my teeth which can cause a lot of the symptoms I’ve been having.

I just wanted to give a bit of an update and maybe get some advice following my earlier posts. I found the information Karen gave really helpful and just talking about it helped to ease my mind. I still have some ‘symptoms’ but they are much less that last time. Now I mainly just have a slightly spaced out feeling and some problems concentrating a couple of days a week, but no numbness or any of the other symptoms and what I do have comes and goes. I have noticed that I can be sensitive to sudden loud noises, or sudden movement and feel a bit dizzy for a few seconds but then this goes. I went back to my neurologist, I think mentioned above I was going to, and he said he thought it would be legacy from last time and wanted to do a lumbar puncture. I got a call this afternoon to tell me my appointment is tomorrow at 11am. So this was a bit of a shock! I move to London on Sunday, and part of me wants to get this done with while I’m still here, and part of me worries I’ll end up with a ridiculous headache and not able to go to work next week. Can anyone give me more info about the chances of that happening? I feel like I don’t really understand how MS works. Would my symptoms come and go like this? Kind of have them a few days a week, then none, then back again? Since my last posts it’s been established my jaw doesn’t close properly and I’ve noticed I’m grinding/clenching my teeth which can cause a lot of the symptoms I’ve been having.