Really worried about symptoms possibly being MS

New diagnosis and before diagnosis
1

Hallo,my name is John and i’m 36 years old

I’m an athlete all my life (weightlifting,throwing,bodybuilding) ,my diet is very well balanced and i exercise 2 hours per day every day,intensity and volume changing according to energy levels (never let myself get too tired).I take a lot of supplements to support my good health and i have to say since i got scared about MS and looked up which supplements might help,I’ve been taking all of them for many years.

It’s been a month now,i’ve been having my symptoms…one morning i woke up and my right arm was tingling with needles and pins…thought it would be from bad sleep position but it still remains so and at some point during the day it becomes quite painful and other times it’s almost normal.

Around the same time i had a mild pain in my right mid abdomen and went to a gastroenterologist that gave me drugs for irritable bowel syndrome.The pain and discomfort comes and goes too and i feel my stomach bloated all the time.

Also the last 3 weeks my right eye (all 3 symptoms on the same side) starts losing its sight and i cannot read neither close or far but only somewhere around mid distance.

This was a very hard winter for me…the loss of a friend left me with stress,sleep problems and depression and rarely left home for about 6 months…i’ve done all kinds of tests for all kinds of tests and seem “healthy”…I suspect a vitamin D deficiency due to lack of sunlight but i take my multivitamins and extra vit D (1000iu every day) but i don’t know if this is enough.

Please tell me what you think about those symptoms and what to do next.

Thank you

2

Hi there,

I understand your worries, but your symptoms are not specific to MS, and really could be anything at this stage.

When you say you’ve “done all kinds of tests”, do you mean medical tests performed or ordered by your GP, or some kind of fitness test you did yourself? I’m just not terribly clear whether you have seen a doctor.

If not, that’s certainly the first step.

If you have already been, and tests showed nothing, but problems still persist, you need to go back and explain, and press for deeper investigations.

Hopefully you can get a referral to Neurology, but Rheumatology would also be a credible first start, as the symptoms you describe could eventually fall under either of those two disciplines - sometimes it’s a matter luck whether you’re referred to the “right” one first, as it’s hard to tell. I was initially referred to Rheumatology, when it turned out my problem was Neurology, but I’ve no criticism of my GP, as it was a reasonable first bet. So don’t be too puzzled or disappointed if you’re offered Rheumatology instead of Neurology - there can be quite a lot of overlap between these two, and basically, the search has to start somewhere. You might even be referred to another discipline I haven’t thought of, but the important thing is to be referred somewhere.

I think it’s unlikely your vitamin D is low, if you are already routinely taking quite high dose supplements, but you could ask to have that checked. Be aware that the NHS guidelines for “adequate” vitamin D levels are more than a little behind the times, and recent research suggests they should be a lot higher, but cross that bridge if/when you come to it. First see if they are low, even according to NHS standards.

Another one worth checking is vitamin B12.

Finally, although you believe you are never overdoing it, exercise-wise, I hate to say, but there will be some natural degradation in performance, at 36. There is a reason not many top sportsmen are still top at that age, and many have retired altogether. Are you still trying to perform at the level and intensity you did ten years ago? If so, that may be part of the problem…

Tina

3

Thank you for your reply !

“all kinds of tests” refers to routine blood checkups,an ultrasound for the liver/gallbladder/kindey/pancreas,heart ultrasound.The neurologist said it might be carpal tunnel and suggested i rest my arm from desk work (mouse-keyboard).I did and nithing changed for the better…it even got worse.The intensity and volume of my sports training is adapted to my perceived level of effort…performance has decreased of course but i try to get as tired as i ever did from training…not more not less.It’s not high intensity training year round,and those problems started happening 4-5 months after my peak well into a long period of body and mind rest.

Symptoms appear more and more painful and evident as the day progresses…i feel normal in the morning and about 1-2 hours before sleep my arm hurts the most and my eyesight is the most blurry.

I also find it unlikely to be low on vitamin D,but i will check about the B12 -i already got 2 injections as of yesterday and see what happens.Anyway,it’s water soluble and even a too high dose will be excreted remaining harmless.

I’ll obviously go back to my neurologist,but what do i say and what do i ask for specifically ? Whan looking for MS,which test show that you do have it ? I’d like to go as prepared as possible…i’d like to add that apart from my regular checkups i rarely go to doctors unless there’s a problem peristing I cannot explain.Even as an athlete with a higher than average connection to how my body works i cannot wrap my head around this…it is beyond me and i need help.Thank you !

4

Hi John,

I must say, I find the tests you’ve had quite odd, for the symptoms you describe, but perhaps arm and abdominal pain, specifically, were red flags for referred pain from a possible heart attack, or a gall bladder problem.

Heart, liver and gall bladder checks are not typical for someone who presents with MS-like symptoms (I definitely had no such thing), but I can only assume they thought better safe than sorry.

But you say you already have a neurologist, so in that case, someone has narrowed it down to probably being neurological?

What is the position with your neurologist? And is my feeling right that you may not be in the UK? It’s just that, on the NHS, you cannot usually “go back” to a neurologist unless they call you, or you’re referred there by a GP.

So I’m wondering how it was left with your neuro last time. Were you told: “Fine, there’s nothing wrong, I’m discharging you.” or: “I want to see you again in six months.”, or: “Call me if anything else happens!”, or none of those?

I would strongly urge you do NOT approach any doctor asking for tests for MS. Certainly in the UK, this is more likely to earn you the label of a neurotic self-diagnoser, with no more than hypochondria. IF your neurologist thinks MS at all likely, they will usually order appropriate tests without having to be asked or prompted. Also, most people don’t react well to being told their job by someone whose only source is Google (or an online forum!) - doctors are no exception. So you just have to trust he will know which investigations to do, based on your symptoms. Just stick to a factual account, and let him (or her) work out what it might mean - don’t try to guess (MS has over 100 lookalikes).

Of course, if you are in the U.S, for example, and a paying customer, you can probably be tested for anything you like, however unlikely your doctor judges it to be. If you can come up with the money, they will come up with the test. But of course, unless money is absolutely no object, there is a downside to requesting tests your doctor doesn’t feel are relevant or necessary. You could spend a fortune looking for things that are “low probability”.

I apologise if you are in the UK, under the good old NHS. In some respects, it appeared you might not be.

Tina

5

John, my guess is that you are not from the UK. If you were, one month after waking up with a tingling arm you would have got as far as a GP who would have advised you to get out more and stop Googling!

Seriously though, the thing I do think you need to concentrate on is your vision. Have you had your eyes checked out? Sudden changes in vision always warrant investigation.

Try not to jump to conclusions about what might be the matter. You have nowhere near enough information.

But do get those eyes checked.

Alison

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