Last reply 3 years ago
In need of some positive thinking :)

Hi am new to this site and don’t know what I am really doing 🙁 I have not yet received a diagnosis , I have my first brain MRI this Saturday. I had a spinal MRI nearly a year ago after some leg symptoms that lasted around 6 weeks and nasuea and off balance that was diagnosed as vertigo by my GP. By the time I had the scan these symptoms had long disappeared and my scan was all clear. After discussions with my neurologist I decided to leave it at that and see if anything happened in the future, I agreed visits every 6 months just to make sure everything was ok. But around 12 months later just after christmas I suddenly had double vision and was in a bad way, I was so scared but MS never even crossed my mind. It was the orthoptist who finally told me that I had right internuclear ophthalmoplegia, she had to tell me quite a few times this was something neurological for it to sink in and I then cried when realisation hit me! It took me 5/6 weeks to recover and I had a patch on one of my lenses so I could try and get on with looking after my 2 children and working. I am really upset that it has taken this long to finally get a scan and I am terrified of the results, I know that I have MS but sometimes I forget. I haven’t really decided what I will do after diagnosis, I hate taking any medication and have been thinking of trying to slow the progression down with diet and lifestyle change. I don’t really hear of any positive stories so if anyone has any please share with me and give me some hope 🙂 x

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krisp
3 years ago

Hi holly
I’m in a similar position to you ish
I’ve had one attack I think with a range of symptoms, it is hard and I know the thoughts your going through, there’s no knowing what it will or won’t be, there are averages etc. the one thing that I can say is from reading online the medical profession has never taken as much of an interest in Ms as it is now, there are so many pharma companies trying to get a piece of the pie so to speak which is good news for all. Plus there are a range of treatments already on the market, you could also hold on to hope that yours so far sounds sensory which can be a good prognosis factor.
Sorry I can’t give any real expertise as im in a similar boat, but anything you need to ask I’ll try help, my neuro reckons my knowledge of Ms etc is beyond some of his interns, Dr Google and me are best mates
Kris


krisp
3 years ago

Ps regards to supplements
Vitamin d3, b12 and omega 3 tend to be the General consensus Witt regards to good ideas
Along with possibly biotin from what I’m reading, there’s a phase II trial that showed improvement with this at huge doses, a little cant help


hollylb10
3 years ago

Hi Krisp thank you for your reply, it is nice to know I am not alone (which I know I am not, but to hear from others makes it easier) I take all of the above supplements, there are so many that are advised I sometimes don’t know where to start. What do you mean that sensory can be a good prognosis factor?


krisp
3 years ago

No problem @holllyb10
There’s been studies for years on prognosis factors disease course etc
And they sort of all agree that isolate sensory or sensory plus symptoms tend to be a better prognosis in the long run I.e. Possibly a less aggressive course, however this is not guaranteed as we all know but then nothing is
Also younger age at onset, sadly for me being female tends to be better etc.

One thing i remember reading from all my research, when Ive been worried about disabilitu, wheelchair etc
A woman on a forum said she was the same, worried about not walking etc for years, within 7 years she couldn’t walk, not because of Ms, because she got hit by a car! Kind of makes you realise that although we all want control, we never really have it lol


hollylb10
3 years ago

I am 29 and my symptoms began when I was 27, but who knows, I may have had to longer. I have my brain MRI on Saturday so I will just have to wait for the results. Are you waiting for a diagnois? Or are you on any meds? At the moment I am just following a gluten free plant based diet to try and stay as healthy as possible and try and halt any attacks while I wait reaults and then decide what to do…


krisp
3 years ago

No nothing yet as not diagnosed
They’re trying to work out of its a cis and do another mri in May, that and blaming a lot on anxiety? Which oddly enough came on after the symptoms and worry about Ms, like anyone would not be anxious

Is this your first mri? I think to be positive though you need to see the two ends of the scale there are some who have no problems, something like 75% of people never need a wheelchair, theres also studies showing it takes up to 26 years I think on averge to require a cane, again this is all before the new diseas modifying drugs came into play which may slow things down even more for many.
They are also looking at the progressive types and how to slow them down, plus remyelination which should in theory help to reverse disability
You never know


hollylb10
3 years ago

I think my neuro put my first symptoms down to a CIS, but then my eye symptom started and then I knew it was more than that. You sound like you have a good neuro, I have waited so long for this scan it seems and really I should have had a spinal and brain MRI together 9 months ago!

I understand the new drugs are having better results, my sister works in pharmaceuticals so she is often trying to convince me on them…but I hate the though of it. I have 2 young children so I know I will end up taking something if I am offered, it would be selfish of me not to when I have others dependent on me.

It just seems like one of those things that you never imagine happening to you. And you are absolutely right that we can never really control our journey in life as anything could happen. I remind myself a lot that this is not a death sentence, that helps me to think positivley most of the time 🙂 but when you read so many sad stories reality hits you like a bus again 🙁


stumbler
3 years ago

@hollylb10 & @krisp , this year is a bit of an anniversary for me. It’s the 30th, yes, thirtieth anniversary of my first MS episode. It did take another 12 years for me to be diagnosed, but that was down to lack of MS activity in the interim.

So, 30 years later, how am I? Well, I own two sticks and a wheelchair. The sticks are used if I go out of the house and the wheelchair is for when I have a distance to travel. Indoors, I just bounce off the walls a bit, but I still go upstairs, unaided, to bed.

But, I have not had the benefit of the medical advances that there are available to you now. I was given an interferon treatment in 2005, which was ceased in 2010.

MS treats everyone differently, but we can all fight back. We need balance in our life. A balanced healthy diet and a balanced life-style, avoiding extremes of highs and lows. And, avoid worry and stress!

I know, a potential diagnosis of MS hanging over you and young families! But, worry and stress do not achieve anything. In fact, they can actually antagonise the MS and make it worse.

If someone had told me that last bit of advice 20 years ago, things might have been different for me!

But, I still drive, go swimming three times a week, attend a Pilates class and a yoga class. And, if the weather warms up a bit, I might go fishing.

Positive enough? 😉


krisp
3 years ago

@stumbler
As always it’s appreciated, I know no two people are the same but as holly says there are a few horror stories out there which knock you back a bit
I think without sounding horrible if I can still be walking after 30 yrs I’d take it, I know that’s not all you go through and I know you’ve had it hard too

@hollylb10
I did and still do what your doing, read good stories quite a lot of them, and then I read one bad one and fall to pieces, there just is no way of knowing, I think I’ll carry on researching what I can and enjoy my life as much as I can I only get one


stumbler
3 years ago

@krisp & @hollylb10 , can I suggest that you avoid using Doctor Google – he/she can find all manner of horror stories, which serve no purpose whatsoever!

Always use creditable sources of information like the MS Society or the MS Trust. The MS Trust do a good selection of publications for the newly diagnosed :- http://www.mstrust.org.uk/shop/products.jsp?catid=56

You can read online or order a hard copy. They also do material which is aimed at children of various ages, for when the need to let them know about Mummy arises. 😉


hollylb10
3 years ago

Thank you @stumbler….tonight I am feeling emotional and that just set me off again, lol! I am not sure my partner knows how to deal with my ups and downs, they can be quite extreme. But his attitude is to just live my life and stop worrying as it might never get any worse or it might and we just deal with it when it comes to it. I suppose that is the only attitude you can have. I have ordered some info packs from the ms trust but, I guess I have been putting off reading them as they are still in the envelope! Sometimes there is too much information to take in…


Anonymous
3 years ago

@stumbler is right about the internet! There are vultures who prey on the unsuspecting with “cures” designed for desperate people. It takes a bit of discernment to separate fact from fiction. Those are great sources that Stumbler gave you and I also know that he would recommend Barts and London Research at http://multiple-sclerosis-research.blogspot.com . This is more detailed info for your graduate studies! 🙂


krisp
3 years ago

Hi both
@hollylb10
These guys seem to know what they’re talking about, I find myself using Dr Google way too much, I now look at this, Barts as suggested and MsSociety
Ps @stumbler I think it’s the horror stories that scare me the most, I already rang My financial advisor to check on my life insurance etc!
Thanks again all for the help for everyone
@hollylb10 whatever it may be you’ll be well looked after and advised here, together we’ll beat this monster !!


hollylb10
3 years ago

Thanks! I will take a look at this website.

So how do you feel about the MS diets? There are many websites out there for that too!


Anonymous
3 years ago

@krisp, I don’t know if you guys have it across the pond, but I would look into long term disability instead of life insurance. I doubt you will need either if you are diligent and get the help you need. 🙂


stumbler
3 years ago

It would be difficult to get any form of insurance in the UK, without getting the premium loaded. In some cases, it would be unaffordable.

Any existing insurance would be unaffected.

Car Insurance is the exception. The companies can’t penalise you, if you get a diagnosis of MS. But you do need to tell the DVLA and the car insurance company.


hollylb10
3 years ago

Would you recommend taking out insurance? I do not have any, and clearly at some point in my life I should just because I am a parent but should I do it now before a final diagnosis? I have never thought about these things to be honest…


krisp
3 years ago

Hi both @mbrsinc @stumbler
I already had life insurance and critical illness cover that I took out quite a few years ago when advised possibly quite correctly by my financial advisor
It covers Ms as far as I’m aware too? Pays of mortgages on houses and leaves some money left over ! I’d rather never have to use It though


krisp
3 years ago

@hollybl10
My neuro told me I should tell our mortgage company he was really quite the worrier which I guess bodes well
I think If you get Intouch now they’ll need medical records from
Your doctor plus the questionnairs will specifically mention Ms mine did when I last did it
They will possibly penalise you for it


krisp
3 years ago

One thing @hollylb10
They can’t penalise you if you haven’t been diagnosed yet i don’t think


Anonymous
3 years ago

That was my point. Check into it while you have your wits about you. None of you recently DX’d patients should ever need it with the newer treatments available to you. Make sure to inform yourselves and insist on the most effective DMTs.


jindies
3 years ago

Hey Holly


jindies
3 years ago

Sorry!! I had some rambling response … And apparently I didn’t save it =|
I think ultimately, be positive, surround yourself with positivity and just reaching out via this platform was a great step forward! =)

– Nikki


Anonymous
3 years ago

@krisp, you have a smart financial adviser and you are smart for having a financial adviser! Hope it was a GIANT waste of money and you never need it.


krisp
3 years ago

@mbrsinc
Me too I really wish that’s true


stumbler
3 years ago

@krisp , I’d check the details on your Critical Illness Cover. It may cover a diagnosis of MS.

It would be nice to have the mortgage paid off, so that the roof over your head is then yours. That will avoid any financial stress in the future.

@hollylb10 , unfortunately, you may find some difficulty in obtaining life insurance now. Investigations into a potential chronic illness will be viewed by Insurers as already having a diagnosis.

When I say difficult, it will be possible, but at a cost.

You could have a word with the MS Society Helpdesk (0808 800 8000) and ask for their advice on this issue.


krisp
3 years ago

@stumbler
I’ve just checked with my financial advisor and it’s listed as something that’s covered upon diagnosis. What else is extremely interesting is there’s an added cover called best doctor, which gives access to the top 10 doctors in their field for each illness throughout the world, hopefully I’ll never need to acces this but it may be interesting given the lack of good care in the uk sometimes

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