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Someone tell me I'm being stupid, please...

Still no definite dx - still waiting for LP results for that - but I’ve been spending more time out in the garden in the last few days, and soaking up the sun in a big and serious way - and I feel fab!! The difference is making me wonder if my problem could be something other than MS; I’m thinking acute VitD deficiency. Himself is trying to bring me down to earth a bit, bless him (I think to avoid me crashing violently when I get the DX) and has gently pointed out all the obvious stuff - lesions on MRI being the obvious ones. But then I start thinking; I’ve had two serious episodes up til now, one in January this year and one back in 2008, very similar symptoms, and both in periods of my life when I’ve had very little sun exposure.

So, Stupid Question ; could acute VitD deficiency produce something visible on an MRI scan? I know the other symptoms are similar to MS, and I have to keep reminding myself about the lesions. But having had one misdiagnosis already (at first they told me I’d had a stroke), I am less inclined to take anything at face value…

Will someone please talk some sense into me?!

Hi,

I do not want to talk you into believing you HAVE got MS, as that is still a long way from being firmly established. However, I don’t think vitamin D deficiency causes lesions, no, and if you have had blood tests I would have expected it to have been among the first things they tested anyway. So I think it’s very unlikely you have “acute vitamin D deficiency” - or acute anything deficiency - but nobody in the medical world has even thought of it yet. Testing for common deficiencies is a normal part of the diagnostic process.

I’m now a diagnosed person, but looking back over my pre-dx history, I’ve had most episodes/relapses, whatever you care to call them in Jan-feb too. So I always face those months with some apprehension, even though I know a relapse can happen at any time, and past experience doesn’t mean they’ll always be in February!

A lot of people with MS are low in vitamin D as well - vitamin D deficiency is implicated in the development of MS, and possibly in the subsequent course of the disease. For this reason many people choose to take Vitamin D supplements. But, it’s not yet 100% clear whether that is closing the stable door after the horse has bolted. You might need a time machine to go back and boost childhood Vitamin D, to really make a difference.

Two brain lesions are comparatively few - but still two more than would be expected. I was diagnosed in my 40s, with six brain lesions, and one - maybe two - spinal lesions. I was told this was “few”, and that patients my age would often present with literally dozens. So if six is “few”, two must be very few. They still shouldn’t be there though.

Tina

x

Cheers Tina; I don’t know how many lesions I have so far - awaiting results of the most recent MRI and the LP, which I’ll probably get when I next see the neuro in a couple of weeks - but I can put my finger on those two relapses/episodes. You’re talking perfect sense, though. I think the Limbo is driving me the most potty. Always the waiting - a month here, three months there, for one test/appt or another - fercryingoutloud, someone tell me something definite! Even if it’s what I expect, deep down - a 100% certain diagnosis of MS - at least they’ll be sure and can show me evidence (from the LP results), and then I can accept it and start learning to live with the damn thing. Although I realise that certainty is in short supply with this palaver! Whatever, though; I intend to up my VitD intake - whether or not it helps in the long run, it makes me feel better and gives me an excuse for slobbing around in the sun!

Oh, sorry - I seem to have conflated two completely unrelated posts, and thought you were the same person as the “two lesions” poster. But you’re right - maybe it was the “two episodes” part that made me see a connection that wasn’t there (not that it’s one lesion per episode or anything - looks like I just got hung up on the word “two” ).

Try not to be too upset if the LP still doesn’t give a definite answer (one of the reasons I refused to have one). It can give a small proportion of false negatives (normal result when the person does have MS) AND false positives, so it’s just another piece of the jigsaw, not an absolute yes or no. An LP characteristic of MS would certainly support a diagnosis (but not be sufficient by itself) but a normal one couldn’t rule it out.

You may be surprised that, technically, there’s never a 100% certain diagnosis of MS - except one made post mortem, by forensic examination of brain tissue. But obviously it would be highly impractical if nobody could ever be diagnosed whilst still alive, so they have criteria for how sure is “sure enough”.

That’s why a diagnosis is often so long and hard, in comparison with other diseases. There’s no definite test, so they have to look at the weight of all the evidence. If there’s still not enough to be confident, they have to wait for more, which can be very unpredictable as to how long it takes. Some people will have further clinical developments that prove decisive within just weeks, but others could go months or years with very little change to their condition or clinical findings, because that’s how variable the disease is.

Sorry I’ve rambled on a bit, but I think people (not you, especially) sometimes unjustly suspect neuros of dragging their feet, when the reality may be that they don’t yet have enough evidence for a diagnosis. My neuro - like most, it seems - never explained to me exactly what he was still waiting for, and why he couldn’t diagnose straight away. Since diagnosis, I understand what the hold-up was, but nobody ever explained to me while it was happening, so I thought my neuro was just reluctant to commit himself, rather than that he wasn’t allowed to diagnose without more evidence.

Tina

x

Thanks - but I’ll pass on the post-mortem diagnosis, if it’s all the same to you! It’ll be all the same to me by then! :wink: If it comes back non-committal, I’ll be a bit peeved, I confess. The only reason I agreed to the LP at all was for more certainty in diagnosis - and I’ve already made it clear that if anyone suggests another one, my response will be unrepeatable and end in the words “…right off!”. Still, it’s about on a par for how this thing has gone so far - and I gather, how it will carry on too. That’s the nature of the thing, I suppose, but as someone who deals more comfortably with hard evidence than with probabilities, it really grates my cheese! I’m not blaming anyone for the delays individually - the NHS are pretty bloody good and I’m sure they’re not faffing about on purpose, but the [filtered language!] Tories are determined to dismantle the Welfare State as quickly as possible (before they get shafted at the next election), and there are not enough neurologists to go around. And I’m getting the definite idea too that some of them think that having to explain stuff to the ‘lower orders’ is a bit of a waste of time!

Hi,

after I had pins and needles for the first time EVER 2 days after I was told that it’s likely to be MS, I decided that my brain is apparently quite good in making up symptoms I’m supposed to have with MS (and tingling or pins and needles are quite easy to make up). Since then, I’ve decided that the only way I can deal with the limbo is to assume I don’t have MS until a doctor tells me otherwise. I have no way of knowing what you have, but considering that MS seems to be one of the vaguest diagnoses there is (seriously, a disease where one category of diagnosis ‘possible MS’) and include so many different symptoms, there seems to be plenty of room for optimism.

Like I said, this is my coping strategy so that I don’t make up phantom symptoms - especially since I already watch every twitch my body makes extra carefully. I know that it may not work for everybody, but at least it keeps my head from spinning and googeling symoptoms all day.

And I’m completely with you on the tories and the NHS. Surely, it can’t be in anyone’s interest that our stress levels rise and our symptoms get worse…

Hope you hear back soon,

mj