New diagnosis - but not given anything I can do...unsure....

New diagnosis and before diagnosis
1

Hi everyone,

I’m new to the forum and this is my first post…as with all of you, I wish I wasn’t here!

I was diagnosed less than two weeks ago and have found the news hard to come to terms with. Basically, I had a few episodes of numbness over the last 4 or 5 years…numbness in fingertips at one point, then numb fingertips and toes for a week after my wedding (thought it was stress), another time brief numbness around the jaw (thought it was wisdom teeth). Each time they went away after a while. I got another episode around Christmas 2008 but I wasn’t stressed and couldn’t see a reason for it, so I consulted a GP. Got 3 MRIs, nerve tests, blood tests and then a lumbar puncture. The first MRI had been clear, the second there was a lesion around the neck; in the third MRI the neck lesion was gone but there were 2 in the brain: they were “atypical” of MS, I think because they were smaller than you would expect. It doesn’t seem that the neurologist thought it would be MS. However the lumbar puncture found the O bands / protein that resulted in me getting a “probable diagnosis” of MS - he said that it was a diagnosis, and the only way you’d say 100% is if you saw MRIs over the years with lesions getting worse.

At the moment I have numbness in two big toes, for a few months previously I had numbness in the middle finger of my right hand but I think that is fading. Previous to that, not long after the birth of my second child, I had pain when stretching or bending my leg / leaning on my shin in certain ways, then early this year I had pain in my middle right fingertip if I stretched my hand (that later changed to numbness). That was the first time I’d had pain as opposed to numbness.

Other than that, I am dropping things more often, I had been putting that down to tiredness with having young children (I have 2) and less sleep, but now I don’t know. And sometimes I am searching for a word but again I put that down to tiredness.

Anyway that’s the story in terms of symptoms and diagnosis. Thankfully the numbness hasn’t got in my way so far, and I had been hopeful that it was just something minor, I had looked up MS but saw it as a worst case scenario. When the neurologist told me the LP results he said “To my surprise we found the protein”.

As you can imagine I am horrified at the diagnosis and have been very upset thinking about what the future might hold for me (and my family). I have only told my husband and best friend as yet, so I am also having the difficulty of going on with normal life and pretending everything is fine, which is surreal and unpleasant.

So…to my questions…the neurologist told me that for “human reasons” he was not going to recommend that I start any medication yet. He felt that with my symptoms being mild, the possible side effects of medication and the lifestyle change in injecting etc outweighed the benefit from alleviation of symptoms. I specifically asked whether taking or not taking medication had any impact on the long term chance of disability and he said no. I asked if there was anything I could do in terms of diet etc but he said there are no proven links between supplements etc and just to have a healthy diet, exercise etc. Fairly vague.

I wanted to consult a private specialist (neurologist above is in the public system in Ireland) but it seems I may not be able to get an appointment before September. I wanted to ask the private specialist:

  1. For a second opinion on the diagnosis - just in case

  2. Whether it is correct that I shouldn’t be taking medication yet. I was given brochures after the diagnosis on the various symptom-alleviating medications (for future reference) and one of the booklets suggests that medication can help prevent or lessen symptoms which would prevent scarring / nerve damage which could be permanent. That would mean that the neurologist was wrong in saying that not taking medication had no bearing on the long term chance of disability: if my symptoms are causing nerve/myelin damage that might be irreversible then surely I should be taking medication?

  3. I wanted to ask about having a third child. The public neurologist said there was no reason not to medically - but of course I am concerned about my ability to look after a baby and there is no way to know if or when my symptoms might worsen and impact my ability to look after my children. I wish I could get some indication of whether it would be a bad idea / irresponsible to go ahead.

  4. I wanted to ask about dietary or other changes I could make to improve my long term chances of avoiding serious disability / alleviating symptoms. I googled it, which of course is not conclusive, and there are various suggestions from Vitamin D, cutting down saturated fat to increasing uric acid and other theories. I would like some advice on this, as I hate being told there’s almost nothing I can do, and just sitting and waiting to see if I become disabled or not!

I don’t know if anyone has any advice to give on the above questions, but any advice would be greatly appreciated.

Thanks …

2

Hi there x I’m so sorry about your diagnosis x I can’t answer all your questions but I’m sure someone will be along soon with lots of advice for you x

I do know that MS affects people differently - nobody is the same so it’s difficult to predict x it sounds like your symptoms have been very mild and could well stay that way forever!

It’s early days and I think once you get some answers and reassurances you will settle down and make the very most of your life - that includes all the babies you want!! xxxxxxjenxxxx

3

Hi Vincere,

It’s really tough when we receive a diagnosis like ms and it can be very difficult to get your head around so take your time getting used to the news. Take things at your own pace.

It’s thought that the earlier treatment (dmd’s) is started, the better. But having said that there is a criteria that needs to be met first. As your symptoms sound like they’ve been mild this could well be the reason why your neuro doesn’t think that it’s the way to go for now. They’re heavy duty drugs and boxes need to be ticked to qualify for them.

Have you been assigned an ms nurse? They can be worth their weight in gold and give you access to other services and support should you need them. She can also offer help & advice on your symptoms and managing them.

There’s no reason why you can’t have another baby and although I think most of us worry about our future and what it may bring, it’s also something that we don’t really have that much control over either. No one knows what their future holds, ms or not.

Some people do say that certain diets have helped their symptoms but quite often these diets are extreme and in some cases it means cutting out certain food groups. So if you do decide to embark on one then make sure that you’re well informed and replace the food groups with an alternative. To date there has been no scientific evidence that it makes any difference to ms. It’s my view that a general all round healthy diet is the way to go.

Vitamin D is different though. Lots of us are on it and is definitely something worth looking at. There’s been lots of research on vit d and it’s benefits.

I hope some of this helps - good luck

Debbie xx

4

Hello, and welcome to the site

Please don’t give yourself a hard time about finding a diagnosis hard to get to grips with - you wouldn’t be human if it wasn’t! Take it each day at a time - you’ll get there.

It’s unusual, but not impossible, for someone to be given a dx of MS incorrectly. If you have doubts, then you should definitely talk to your GP about a second opinion from an MS specialist.

As Debbie says, there are criteria for getting onto disease modifying drugs in the UK which require two “clinically significant” (for that read disabling, severe, debilitating) relapsed in two years which, at the moment, you wouldn’t meet. If you are in Ireland and not NI, then it would be worthwhile finding out what they are there because they might be different.

The current UK criteria are purely about short-term cost-cutting. All the evidence points to the benefit of getting onto a DMD as early as possible. The “first line” injectable DMDs reduce the number of relapses, reduce the severity of relapses that still occur, delay the onset of progression, reduce progression (a new study confirms this), reduce the number of people who develop MS from CIS and even increase life expectancy (studies showing people who were on the active interferon in the original trials significantly outlived the people who were on the placebo).

As far as the injectable DMDs go, most people find that the side effects are negligible / stop happening after some time. Moreover injections do not interfere greatly with anyone’s life these days! It’s at most once a day - diabetics might have to inject four times a day and take their blood levels regularly too. Needle-phobia can be an issue for some people, but the new automated injection devices cover that too these days.

Whether or not to take a DMD when offered is, of course, a personal choice. However, the evidence is clear - people who take them do better than people who don’t.

There is no reason for a woman with MS not to have a baby. Actually, a lot of women find that their MS improves a lot when pregnant. There is a short period after having the baby when the risk of relapse is higher (about the first three months), but then everything goes back to normal.

What I would say is that I think it’s a very bad idea to not live life to the full because of MS and what it might bring for the simple reason that it might never happen and, if it did, I’d cope. But that’s my approach and we’re all different.

There is some recent evidence from Australia that a healthy diet can help reduce the number of relapses that people have. The difference is not massive, but anything on the plus side has to be considered at least! As Debbie says, some of the popular diets are a bit extreme (there is no way I would cope with them!), but eating healthily and sensibly has to be a good idea - keeping our bodies as fit and healthy as we can can only help. (Exercise is important too.)

The evidence that vitamin D3 is important in the development of MS is pretty overwhelming these days. The evidence that it helps reduce relapses is growing, but isn’t as solid yet. Despite this, many neuros in the UK now recommend taking a D3 supplement. 5,000iu a day is probably the most common recommendation. You can buy these quite cheaply on-line (I get mine from amazon) - highstreet shops are extortionate! Don’t worry about the high dose vs the recommended levels - our body naturally makes way more than this in only a short time in the sun.

Hth!

Karen x

5

Thanks very much for your replies. You are probably right that I don’t meet the criteria for the drugs yet, although the neurologist didn’t say that, he was saying that for human reasons having to inject and possible side effects outweighed the benefit in alleviating such mild symptoms. If it was that I didn’t quality I wish he’d just said that!

I appreciate what you’re saying about living life and who knows what might happen…but on the subject of having another baby, I feel like I need to be very responsible and make the right decision. If I decide to go ahead and then am unable to take care of the baby, or lose power in my hands and God forbid drop the baby, I will feel like I should have seen that coming and it is my own fault. It seems no one can give me a guarantee that I wouldn’t suddenly get an unexpected onset of severe symptoms. Given my history to date it seems very unlikely but there is a risk that it could suddenly ramp up…and with a small baby totally dependent on me, I just feel like I need to consider things carefully before I go ahead.

To be totally honest I am also afraid that if we go ahead that whenever I tell people about the MS, they will judge me and might think we are irresponsible to go ahead and have another child post-diagnosis when we already have 2 lovely children. And there is the slight chance that a child would (due to genetic susceptibility) have MS…although I would hope that is no reason not to go ahead as life with MS is better than never having been given life at all…but you can see the kind of things that are going through my head.

I delivered a full letter detailing my history and my concerns, with disk copies of my 3 MRIs and letter of referral from my GP, to the clinic where the private specialist works. I can only hope that he can fit me in for an appointment soon. I don’t yet have the letter with the actual diagnosis and lumbar puncture results so will have to give him that when I get it…slow hospital…

Thanks again for your replies,

Vincere

6

Please don’t worry about passing MS onto a child: genetics is only one of several factors and having a parent with MS only increases the risks very slightly in general. You should give your kids vitamin D3 supplements though - it is another factor, but one that you can at least do something about!

Kx

7

[quote=“rizzo”]

You should give your kids vitamin D3 supplements though - it is another factor, but one that you can at least do something about! [/quote]

Oh God! I didn’t even think about that! Can it prevent our kids from getting MS or reduce chances?

8

[quote=“midnightmoon”]

Yep, but please don’t feel guilty for not thinking about it - I didn’t either until too late, just like 99.9% of us I bet!

D3 is only one of the factors and there are still people who grew up in hot, sunny climates who get MS, but it’s worth doing anyway. The Scottish government has been toying with adding D3 to major foodstuffs, largely because of the high incidence of MS there.

Kx

9

Thanks - it’s not just passing on MS to a child though, it’s my concern about my ability to care for it: I don’t know if my symptoms will suddenly get worse if I’m alone with 3 kids including a newborn, or if in general things will go downhill while a new baby is still young…and if they did and my ability to care for the baby is compromised, will people think we should have chosen differently and it’s all our own faults? Whereas our two daughters were born before anything even showed up on an MRI, let alone diagnosis.

10

Thanks Karen.

I shall be getting some VitD3 into the kids ASAP! How much would be a normal dose for kids? Do they need as much as an adult?

Vincere, having a baby comes with many problems anyway and yes, disability will play a huge part in your decision, but make the decision for you and not because of what anyone else ‘may’ think. People will always have an opinion no matter what we do or how we live our lives. Often we presume we know what other people are thinking and we are often totally wrong.

Sometimes when we feel others are judging us we are actually judging them too.

Take other peoples reactions out of the equasion completely - it’s nothing to do with anyone else.

You do need to be practical, of course, and I would have to think very long and hard about having another baby (although not at my age now) if I had MS to think about too. Do you have lots of support and help? Do you have a good network of family and friends? People who would help you both practically and emotionally if you did have another baby and needed some extra help?

I don’t envy your decision, it’s a tough one alright, but think only about you and your husband and the children you already have. What do they want? …and what do you want?

11

My daughters are 3 and nearly 1 and I have started giving them Vitamin D but I hope it is not too late to give them any protection against getting MS.

In terms of whether to have another…if we do and my condition worsens, I feel like people WILL think badly of us that we knew I had MS and still went ahead. I don’t know that I would have loads of support or anything like that on a daily basis though I do have people I could call on in an emergency who live close by.

On the other hand if I am fine for 20 years then it would be alright. But I just have no way to know that. If only I could know…

I would very much like to try for another baby but even before this diagnosis I knew that when my second daughter was small it was very hard work and that having 3 would be even harder…that’s without taking MS into account, though of course at present I have no symptoms that are causing me any issue in everyday life. I just wish I could know if that will continue.

12

I am sorry that you have had this bad news. As others have said, please do not be hard on yourself about struggling to come to terms. There is no ‘right’ way of dealing this this kind of thing.

It is a sad fact that MS tends to gate-crash our lives just when we are making some of life’s bigger decisions about our families, relationships, careers and so on. It is very hard, I know. Everyone deals with this in her own way, and it is always complicated. Personally, my instinct was to strip away a lot of hopes and dreams and concentrate on making the best of the good things in my life already. Maybe I’ve been over-cautious, and let MS gain ground in my life that I could have defended if I had fought for it. But fighting isn’t my thing. MS does make a person sit down and do some hard thinking about what is most important to her when times get tough.

What I would say is that this is all very raw and new for you at the moment, and you perhaps do not have to make all your decisions at once. Of course decisions about babies are time-critical, but if you do have time to let the dust settle, that might be good. When you and your husband have got over this shock and found a bit of calm again, that’s a better time to take stock. One thing at a time.

Good luck with it all.

Alison

x