MS or something else?

New diagnosis and before diagnosis
1

Hello there,

I’m undiagnosed at the mo, but have been suspecting ms for some time.

I started having paraesthesia nearly three years ago, with burning pains, crawling sensations, numbness in toes, and nausea. A seem to be intolerant to heat, which can be a major factor in triggers. About a year ago I realised that dairy was affecting me quite strongly, so I cut it from my diet. This seemed to decrease certain of the symptoms such as nausea and the burning sensations.

However, this year I’ve had different or increased problems : one week where fatigue completely knocked me out and I was having strong pulsating sensations and aching pains (in the arms) the whole time, I now wake up sometimes at night to find my whole left leg has gone to sleep, and I can have the left-hand side of my body experience partial numbness from my foot to my head and face. Also, I now seem to have a general weakness in my left arm and hand that comes and goes.

My doctor tested for all the essential things through blood tests, but didn’t really find anything, and said that he wasn’t carrying out any more tests. I felt so frustrated when he said this, that I would probably have to be at death’s door before I’d even go to see him now.

Anyhow, I think I just wondered if this sounded like MS to those of you that have been diagnosed.

Astro

2

Hi Astro,

And welcome. The possible symptoms of MS are many and varied, and so are the conditions that mimic it, so whilst your symptoms could all be associated with MS, they’re certainly not unique to it, so at the moment, the door remains pretty wide open on what it might be (though not the things already looked for in the blood tests, obviously).

As I’ve already advised another poster here tonight, I would suggest you do NOT confront your doctor directly with fears it might be MS (or anything else serious) as this tends to be attributed to anxiety (anxiety being far more common than MS!)

Instead, you could try a slightly more subtle approach, and ask what you should do, then, if the symptoms persist, but he’s unwilling to do any more tests. It doesn’t seem acceptable that you should be expected to just live with it, especially without explanation. You might need to press a bit about why he won’t do further tests. Even if he basically believes it’s anxiety (which I’m sure you believe it’s not), you should be offered some help for anxiety, just to see if it relieves the symptoms. It really isn’t acceptable for him just not to know, AND not to be interested in finding out.

If the: “Well what can we do next then?” tack doesn’t work, I can only suggest trying a different GP. It can be amazing the contrast in approaches, from different members of the same profession.

I have recently found this, even with neurologists. I’ve been diagnosed three years now. Last week, I saw a new neuro for the first time, who was the first ever to mention I should be taking vitamin D supplements! After three years? Luckily, I had done my own research, and was taking them anyway, but isn’t three years after diagnosis a little late to be saying: “Oh, by the way, you should be doing so-and-so”? Why did none of his colleagues (I’ve seen three!) say this was important?

So very much luck-of-the-draw, and you don’t always get the right answers, or someone who’s on your wavelength, the first doctor you see.

Tina

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3

Many thanks for the reply Tina.

I haven’t mentioned MS to my doctor, but its often very difficult to just sit and do nothing when the medical profession seem to write you off. I do get the impression that he doesn’t know much about these types of symptoms though. At one point I asked whether I might have a vitamin deficiency and he said that there wasn’t a vitamin deficiency that could do that to me ( ???). Did manage to get him to test me on the vitamin front though and my B12 was fine. While my vitamin D was under, it wasn’t anything too drastic.

At the moment, I’m trying to figure out whether dietary measures can help whatever is affecting me. I don’t want to just sit and wait for a diagnosis (which seems to be a long way off at the moment) without trying to help myself. That was the reason for my question really. If there’s anything in my symptoms that doesn’t ring true, then it would be good to know.

My husband has also told me to go back, but it really makes me feel so bad that I don’t want to do it unless I know that he’ll agree to refer me. Otherwise, I’m moving to another country next year, so I guess I’ll be getting a new doctor.

Thanks again for the advice.

Astro

4

Hi again,

Without knowing what the problem is, it’s very difficult to know what self-help measures might be effective. Although some people swear by them, there is no compelling evidence dietary measures actually work for MS - and accordingly, no orthodox neuro will recommend them - other than a balanced, healthy diet, suitable for everyone.

And that is assuming your problem even was MS - you are very far from being able to say that. If it was one of the literally hundreds of other conditions that can produce similar symptoms, I don’t know whether diet might be helpful in some cases, or not. But again, it would depend on knowing which condition it was. Random dieting, without knowing which specific problem you’re trying to address, is unlikely to achieve much, I feel.

If your vitamin D is on the low side anyway, it certainly wouldn’t hurt to take vitamin D supplements, especially with the onset of Winter. Low vitamin D is NOT a diagnostic indicator for MS - it’s common in the general population too - nevertheless, a lot of people with MS are deficient, and there’s mounting evidence of a link. So it wouldn’t do any harm to up it a bit anyway.

I would say that’s the only self-help behaviour for which there is pretty strong evidence, now - that and quitting/reducing smoking, if you’re a smoker.

Vitamin B12 is another supplement people often take, as, like Vitamin D, many people with MS are found lacking. But, if you’ve already been tested and found fine, it would probably be a waste of time/money to supplement that.

I really do think the answer (not the final answer, but at least the next step) is to go back to the doctor and insist you’re not happy. Fiddling around with diet in the hope of finding something that helps, more-or-less by chance, is not the most you can be doing to help yourself. If you honestly can’t face returning to the same doctor, then the answer is to change doctors.

You talk about diagnosis being “a long way off”. I’m sorry, but one thing I’ll guarantee is if you don’t go back to the doctor, you will never get one. You’re not really “waiting for a diagnosis”, if you haven’t taken the first step of making clear you’re still looking for one.

Of course, if you decide to wait until you’ve changed doctors anyway, that’s entirely up to you. I wouldn’t criticise anyone for not aggressively pursuing a diagnosis, as it’s a very personal choice. With hindsight, I ignored symptoms for years, until it became impossible (you can’t really ignore waking up and finding you can’t feel your feet, can you?) But if you don’t want to keep pushing, the alternative is to accept the uncertainty of not knowing - which you don’t seem keen to do either.

There’s no “right” answer - it’s your health, your choice. But as you’re keen to do the most you can for yourself, I know which I’d choose.

Tina

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5

Hi Tina,

No, you’re right, I do want a diagnosis. But I don’t think this doctor will give me that. The food aspects come from my journey so far. When the paraesthesia began, I went to see an allergy doctor, because I suffer from allergies and I thought this might be an allergy thing. I don’t think this is an allergy issue now, mainly because of the symptom progression. However, after two years of investigation, I did identify that I was also allergic to hazelnuts, and that I had developed food sensitivities, particularly to dairy. In total, I have taken dairy, gluten, and the majority of tree nuts out of my diet for the moment. I don’t take caffeine as a rule, and if I drink wine, I take only about a quarter of a glass max. While all that seems very tough, particularly for a vegetarian, the difference between how I felt 6 to 9 months ago and now is enormous. I’m still getting problems, but I don’t feel a fraction as ill as I did. This doesn’t negate the fact that I still seem to have had some progression though. But the interesting thing is that with the level of my diet now, I can now pick up when certain foods are triggering me, so I guess I’ve come to rely on that to some extent. The only thing my general doctor has done so far is to give me a vitamin D boost.

Is this MS or not, I don’t know. But whatever it is, it seems to be inflammatory, so I think taking inflammatory foods out of my diet can’t harm me. I have to address things in a logical way, because that’s the way I deal with things. Will I go to see another doctor – I don’t know yet. You were right to shake me up a bit on that issue, but I need to consider next steps.

Thanks for taking the time to reply. It helps to have others’ input.

Best

Astro