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Questions questions questions

Hi everyone,

So quite a big 24 hours for us as this time yesterday we were en-route to the hospital for the results of an MRI scan and we were expecting to be sent away within 5 minutes and an all clear; that didn’t quite happen…

Background - My wife is 33 years old and last year she suffered with severe pins & needles down the right hand side of her body. At it’s worst she struggled to walk properly and had no sensation in her right hand (couldn’t hold a knife properly etc) so we were quite worried. We thought at the time that she’d trapped a nerve in her neck and she had some physio/chiropractor sessions and it slowly got better. However, she still to this day suffers from a tingling sensation down her right side and the feeling of sunburn on the right side of her neck. We’d pretty much forgotten about this as she had been getting better until approx 6 weeks ago she pretty much lost the sight in her right eye (through extreme blurred vision). She went to the Opticians for immediate advice who then referred her to the hospital A&E department. After several eye tests they subscribed a 5 day course of steroids plus arranged for an MRI. The MRI was done about 3 weeks ago and yesterday we went back for the results. We weren’t too concerned at this point as her sight has pretty much returned to normal.

So, the Opto-neurologist (excuse the spelling!) bascially said that the MRI had identified several demilenation spots and that she diagnosed Optic Neuritis. The lady was lovely and although she was spouting lots of big medical terms she effectively said she suspected MS. I guess a lot of you know that at this point your brain stops receiving information effectively as its a bit of a blur for my wife and I what she said next. In terms of next steps we have been referred to a Neurologist and have been told that will be c. 1 month for the appointment. (I’ve seen some other posts on here suggesting you might be able to bring the appointment forward with a call into the Neurologist’s secretary so I’m going to give that a little try).

We have today been searching for as much information as we can on MS and this site appears to be a good-font of knowledge and the posts/replies on the forum seem excellent hence I thought we’d pose some questions too. Please forgive the ignorance for some of these questions as we have pretty much zero knowledge/experience of MS and hence feel a little embarrassed posing them…

    1. How will the nuerologist be able to confirm MS or not? Is this through a lumbar puncture and if so does anyone know what that will involve in terms of timescales?
    1. Assuming my wife is diagnosed with MS what should we expect in terms of recurrence of relapse? I appreciate that is a vague question and everyone is different however can anyone comment on what is most likely to be the case? Do relapses generally increase in frequency/severity?
    1. Is there anything my wife should be doing now to prevent frequency/severity? Diet? Exercise? My wife is a keen cyclist and wonders if she should continue at the same intensity as she does now?
    1. We have 2 children under 4 years of age and are considering trying for a 3rd; are there any considerations/implications for pregnancy if you have MS? Is this irresponsible for us to consider growing the family?
    1. Anything else people think we should know or think about…

Thanks in advance to all; we hope to be able to contribute back to this site at some point as opposed to just selfishly asking for advice from others…

Si & Ange

I am sorry that you have both been hit by this ton of bricks. You are quite right, of course - we all know the feeling.

May I suggest that you explore the main part of this MSS site as the best one stop shop for the specific stuff? This forum is great, but the main part of the site is the place to go for reliable, straighforward, structured information on the condition itself, how it is dx, what are the implications for future children, recommendations on healthy living and eating and all that. The ‘What is MS?’ big tab on the MSS home page is the one you want.

That is the best place for basic info, but on here is the place to come to be with real people who have been in the same boat and who can relate to how the two of you must be feeling and how overwhelming it is. So welcome. If it does turn out to be MS (only neurologists can dx MS, so you aren’t there yet) it will be bloody awful news, obviously, but not the end of the world. Most of us manage to make good lives for ourselves. Do not despair.

Good luck to you both

Alison

Hi there You’ve already been given some good advice, but I thought I’d just answer your questions as best I can, from my experiences. 1. You do not HAVE to have a lumbar puncture to be dx’d with MS. I actually refused one as my MRI was clearly showing multiple lesions and all other tests were negative. The LP is just another test which can help to get the answers. I believe you have to have lesions on the MRI and clinical history demonstrating two or more relapses in different areas to be dx’d, but someone else might be able to confirm the criteria more precisely! 2. This is impossible to answer! Some people go years without a relapse, I have had 6/7 in two years, but mostly manageable and mild. Mine have also been short, but one relapse can last for months. 3. I would say exercising and eating healthily is always good. I take vitamin D3, B12 and starflower oil supplements based on my own research and consultant recommendations. Maybe have a look into this and discuss at your next appointment. 4. Pregnancy is actually good for MS! My consultant said that most women remain relapse free during pregnancy and it is suggested that it has a good long term effect on the progression of MS, however there is a likelihood of relapse during the first few months after birth. I personally wouldn’t have let MS change my plans for more children, but I had already completed my family before dx anyway (5 & 3 now). Be aware that disease modifying drugs cannot be taken whilst trying to conceive or when pregnant, so that’s something to keep in mind when planning timing etc. 5. MS IS NOT THE END OF THE WORLD! Obviously it can cause some difficulties and require adjustments, but you can still have a good life! Take care

Thank you both so much for your replies. We will keep you posted as things progress and we will continue to research on this site as advised. All the best, Si and Ange