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Recently diagnosed sort of ?

Hi there,

Sorry if this is a bit long winded.

I have recently being diagnosed with MS. 4 weeks ago., Well the Consultant said that he’s almost sure it’s MS.

I’ve had strange “feelings” in my hands and finger tips for years , and actually had an MRI scan on my brain 2 years ago for these strange feelings, but the nuerlogist said it was clear and that my hand problems could be down to carpel tunnel, so I just shrugged it all off, however recently I started have tingling in my legs and lost the feeling and control of my right leg, plus my left leg felt like it was on fire, so I decided to visit my GP.

At first she thought maybe a trapped nerve or something simular, but was still a little concerned with my " sharp" reflex’s, and some of my other symptoms, then as soon as I mentioned that my sister and first cousin both have MS alarm bellsimmediatly sounded, so she sent me straight to my local MS clinic where an MS consultant looked again at my previous MRI scan and instantly noticed 2 faint lesions in my spine, which he thought had probably been there for years and that they were causing the problems with my hands and more than likely had either now got larger or another lesion had developed and was causing the newer problems with my legs.

He has booked me in for a new MRI scan, that I’m waiting to have, and took lots of blood, but he said looking at my symptoms and putting all the history together, along with the fact that my sister and cousin both have MS, he is almost sure that I now have it.

The MS consultant really did have a great bedside manner and offered lots of advice, and one thing he suggested was Vitamin D3, at a minimum of 5000iu per day, which I’ve started taking, but I’ve also been told that B12 & Magnesium is vitaly important to MS sufferer’s.

I dont have a B12 deficiency , but from what I can gather by reading up on the net even a slight drop in B12 is not good for an MS sufferer.

Does anyone else know if these vitamins should be taken and what doseage would you suggest.

I thought B12 & Magnesium came in different forms, so what type should we be taking ?

At the moment my symptoms seem to be easing off, however, I’m absolutley shattered, so would B12 help with this ?

I would appreciate any advice at all.

Thanks .

Hi there Jactac,

Unfortunately, as many here have found, there can be quite a long wait between “almost sure” and confirmed diagnosis. I thought I’d been diagnosed (verbally) in Feb/March 2010, but didn’t realise how compelling the evidence has to be, before they’re allowed to pronounce it “certain”. I didn’t get it in writing, in black and white, 'til October of that year, after a follow-up MRI.

That MRI did show new activity, but if it hadn’t, I’d probably wouldn’t have got a diagnosis unless or until anything else happened - i.e. a distinct new episode, OR a further MRI showing changes.

D3 is the only supplement there’s really good, strong, scientific evidence for taking. A lot of people with MS like to take B12 as well, because there’s some evidence it may be helpful for repairing myelin - which, after all, is what gets damaged with MS. But I’m not sure you’d derive any particular benefits, if you’re not deficient in the first place. I’m one of the “take it anyway” people, as it’s fairly inexpensive, and unlikely to do harm. BUT, it’s made no difference at all to how I feel, so don’t get your hopes up of a miracle. It might be doing something, but I doubt the effects will be dramatic enough to notice.

Magnesium’s another one some people like to take - this one can be helpful with cramps. Again, I haven’t noticed any huge benefit, myself. Prescription stuff is the only thing that has made a real difference to cramps. I suppose it depends how frequent or disabling they are to begin with. Supplements and home remedies might help, if things have not yet got too bad, but I found guzzling tonic and stuffing myself with bananas (other popular additions to magnesium) didn’t even touch it. I’m now on prescription quinine, as well as a lot of other things. So the tonic water idea is right in principle, for the quinine, but it contains such tiny amounts, it’s no substitute for a proper prescription.

Tina

x

Hi thanks for your reply.

At the moment I’m still waiting for a follow up MRI scan, my consultant has only looked at an MRI scan that was done in 2010 after I had some strange feelings in my hands, at the time (2010) the neurologist that saw me put my symtoms down to carpel tunnel, it is only now that my previous scan has been re-loooked by an MS consultant because of my current problems.

He thinks that he can see small lesions on my spine that the original neurologist missed, therefore with my current symptoms, previous scan and the fact that my sister and cousin have diagnosed MS, he has more or less confirmed that I have MS, however he did say that he cannot 100% say it is MS without further tests.

Right now I would say that I’m on the other side of an attack, if that makes any sense, my legs are far far better than they were 3 weeks ago, my hands are still “rubbery” and my left eye still feels a bit blurry, but 3 weeks ago I was a total wreck.

I couldnt walk 5 yards , stairs were impossible, I was falling over and just felt useless.

The D3 was recommended by the MS consultant, but when I mentioned the Magnesium and B12 he basically said find something to spend my money on that will give me enjoyment in life.

This is all very new to me so I’m trying to pick peoples brains, not just MS consultants but actual real people with MS, who in my opinion are the ones that can give genuine advice from the heart as well as hands on experience.

I have had tremendous stress in and around my family over the last few weeks, I lost my job, my mother in law passed away, and my father has found out he has bowel cancer, all in the last 6 weeks, so I’m thinking even stress could have an impact on MS.

To be honest at the moment it’s very difficult knowing where to focus my energy.

I need a job, but the MS could be problem, I also need to there for my dad, and also for my wife who only buried her mam Friday.

Life at the moment is horrid.

Anyway enough of my problems.

Thanks for the reply, I really do appreciate it.

Sorry meant to say MS could be a problem with finding a job,

Sorry meant to say MS could be a problem with finding a job,

I would say, on this at least, your consultant can be trusted. If anything was “vitally important”, you would be told. Most people with MS do try at least some complementary or alternative therapies, including supplements, but there are so many things that are claimed to help, with, on the whole, little compelling medical evidence for any of them (with the exception of D3). So it really is a case of if you try something and you feel it helps, all well and good, but be cautious of spending a fortune on things that aren’t proved. If your neuro seems dismissive, it’s because the evidence isn’t strong, so don’t feel compelled to try everything that someone, somewhere, has claimed is important. There will always be someone ready to tell you that if you eat seaweed for a year, or whatever, you can “cure”, or “overcome” MS. Treat all such claims with scepticism, especially if the person or organisation stands to make money out selling you products or advice.

I’m sorry to hear of your stressful situation - or multiple stressful situations. Yes, stress does have an impact on MS, but only the symptoms. There’s no evidence it causes it, or affects progression. So try not to get yourself more stressed, by thinking you’re harming yourself by being stressed! Your thoughts and feelings didn’t cause MS - you cannot “think” a lesion into being.

If it’s any help, my father made an excellent recovery from bowel cancer, so it is possible these days. Sadly, we were to lose him to something unrelated, which was very bad luck, but shouldn’t colour your view about the success of his treatment.

When looking for work, you are not obliged to declare anything about your medical history, and they’re not allowed to ask - although there may be some limited exceptions on health and safety grounds. I wouldn’t imagine, for example, that you can be an airline pilot without full medical disclosure. But it shouldn’t be a barrier to most “ordinary” jobs, because they don’t need to know.

IF you go on to receive a confirmed diagnosis, and you are already in employment by then, it may be time to think about disclosing, as MS is one of only three named conditions (the others being cancer and HIV) where you get automatic protection from discrimination from the time of diagnosis - regardless whether you are disabled at that time. That means an employer can’t bypass the disability legislation by dismissing you quickly, in case you become disabled later. You have protected status from Day 1 - but only if you’ve told them. Something to think about when you get that far, in terms of both employment and diagnosis, but NOT when just looking. I know your health still has an effect on what you might be willing or able to consider, but in terms of what potential employers think - don’t tell 'em!

All the best,

Tina

Thank you ever so much.

I’ve just had one very good bit of news, my old employer has left a message on our answer phone asking if I would like to re-join them.

"Do I want tor re-join them "… To bloody right I do . LOL.

I think I’m going to just stick with the D3 at the moment, as like you say there does seem to be good eveidence that show’s a link between MS and a lack of D3 in people with MS .

Even though my legs are now getting better daily, my vision in my left eye seems to be getting ever so slightly worse, especially in the mornings, the same can be said of the feeling in my hands.

It’s only been about 5 weeks from the start of my “attack” to where I am now, so maybe things have to “peak” then hopefully start to go back to “normal”, if normal is the right word to use ?

So, the job thing looks good, next target is to run a marathon, never say never eh. LOL !!