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Your opinion please

Hi, I’m 26 male and been suffering unexplained symptoms for a while now. I have a family history of rheumatoid arthritis and thought that was the cause but lately I’ve been wondering if it could be something else.

In 2011 I started suffering with pain and stiffness around my knees and lower back as well as fatigue. I felt tired all day and no amount of sleep would help. In the evenings and while I was trying to sleep my legs would kick randomly and uncontrollably one at a time. I went to my GP and was given naproxen and physio but they didn’t really help. My blood tests were normal. After a couple of months however it spontaneously improved.

In January/February 2012 I started with the same symptoms again but this time I had pain around the knuckles on each hand. I also had pins and needles every now and again in my hands and feet. I went back to my GP and was given amatriptaline and referred to a rheumatologist. Blood tests were normal. The rheumatologist ordered more blood tests and xrays but they were normal too. He wasn’t able to give me an explanation. By October I started having difficulties emptying my bladder which I assumed due to the amatriptaline but after stopping this medication it continued. I also became depressed. In November/December it spontaneously improved again, except the bladder problems.

In July this year all of the symptoms came back again. This time I also had pain around my elbows, shoulders, hips and akles. I also get pins and needles just under my left shoulder blade several times a day. Went back to my GP and had normal blood tests. Back on naproxen and anti depressants.

About one month ago I woke with pain in my left eye and a dark shadow across my left eye extending from the nose to the centre. Went to the eye clinic at my local hospital but they couldn’t say exactly what it was. Since this has happened I’ve noticed that sometime my left pupil is noticeably smaller than the right, normally in dimmer light. I still see the shadow now.

Each time I’ve had a flare of symptoms I’ve also had difficulty concentrating, short term memory problems and mood swings. My wife also noticed that I would pause after starting a sentence as if I couldn’t remember what I was going to say. I hadn’t noticed I was doing this until after she pointed it out.

The fatigue and pain is really becoming a problem and I’m struggling to cope at work. I feel like I need to sleep in the day and have been going to bed as soon as I get home.

Any thoughts or opinions would be really helpful. Sorry that its a long post.

Thank you

Hi Gav,

Sorry, but I’ve really no idea what it might be. It’s not possible for a lay person, or even an expert, to evaluate the likelihood of it being MS, purely from reading a list of symptoms. Not only are the possible symptoms of MS extremely many and varied, but there are literally hundreds of conditions that can produce similar symptoms. MS is a diagnosis of exclusion, which means all other possibilities have to be ruled out first, through extensive testing, and sometimes even then by a watch-and-wait approach, to see if development really is consistent with MS, or if it might still be something else.

It’s not clear, from your post, whether you’ve ever returned to your GP, after your visit to the eye hospital. If not, I’d suggest that is your next step, and explain exactly what you’ve explained to us.

I suggest you do NOT mention MS as a theory - doctors, in general, have an aversion to self-diagnosers, and patients trying to do their job for them - as anybody would, I suppose, who has spent years studying, and in practice, only to find themselves rated slightly less reliable than Google. Just stick to the facts of what has happened, including things your wife has observed, that you weren’t aware of.

Just present it in terms that you’re worried, and need answers - with no particular belief what it might be. Ask if there’s anything else that could be checked. With luck, this may result in a referral to Neurology, but given your family history, and also that there can be quite a high degree of overlap between Neurology and Rheumatology, it wouldn’t be outrageous if you were referred back to Rheumatology, for them to take a second look. Some types of inflammatory arthritis don’t show in the blood - particularly early in the course of the disease - so if you were screened again, it’s possible something might show by now.

I’m a diagnosed person, and did start my diagnostic journey with Rheumatology - who, as in your case, couldn’t find anything wrong. Although my rheumatologist, to his credit, was positive there was something, but didn’t make the next big leap of suspecting it might be Neurology, rather than his own discipline. When I went back, it was to a different and much less thorough rheumy, who diagnosed “wear and tear”, and discharged me, with advice to rest, and take ibuprofen, telling me it was “unfortunate”, at my age, but: “that’s just how it is with some people”.

Despite all this, I still think Rheumatology was a reasonable first guess by my GP, as it was a long time (years!) before symptoms became more classically neurological. Unfortunately, sometimes, it’s a toss-up whether you get the right discipline first go. It can work the other way too - some people end up at Neurology, whose real problem is Rheumatology. Often, in the early days, either is plausible.

I do hope you are able to go back to the doctor, and get a plan of action. Unfortunately a lot of these things are very hard to diagnose, which is why it can be so slow and frustrating.

Tina

Hi Tina,

Thank you for your response. I know its difficult to diagnose. When googling my symptoms there are many which are similar, many of which are auto immune, and it seems that a definite diagnosis is only possible once the disease progresses and subtle differences become apparent.

I was just wondering if anyone thought ms was a possibility or if anyone had experienced similar symptoms. I don’t really know much about it and didn’t even really consider it until the problem with my eye. I read the nhs description for ms and thought that it covered all my symptoms. There were a few extra ones but it said that it’s unlikely someone would experience them all.

I went back to my gp the day after the eye centre and she altered my medication slightly. I’m going back again on 19th Nov and will hopefully try and get a referral as you’ve suggested. I’ve told her all my symptoms but she seems to be focusing on them all separately. She said that next time she will look at my bladder problem.

At the moment she seems focused on my depression. I feel that my mood has improved alot but the pain and fatigue is worse than ever.

I see that you started with a rheumatologist, did you start with muscle/joint pains first?

Thanks

Morning Gav,

Yeah, that’s right - I had mostly aches and pains to start with - especially my feet/legs. With hindsight, I did have occasional cramps and pins and needles, but nothing to send anybody rushing to the doctor’s. I didn’t even associate them with the aches and pains at all.

MS itself does not directly cause joint pain, which is why this is not regarded as a classic symptom. However, it commonly causes muscle weakness, and changes in gait and posture. These in turn can place extra strain on joints and tendons (having to compensate for the weak muscles), causing pain.

I now think this was probably what had been going on for some time - nothing wrong with the joints themselves, but they were having to work harder, because my balance and muscle-tone weren’t right. I later (much later!) found out I had a spinal cord lesion, so this would certainly explain why my lower half wasn’t working properly. But of course, if the main complaint is: “My feet hurt!”, brain and/or spinal cord are not obvious places to look. Naturally enough, they looked at my feet!

A spinal cord problem was not even suspected, until one morning, I literally couldn’t feel my feet. Even then, MS was not suspected, and it was assumed I probably had a ‘slipped disc’ - which was odd, as most people I knew who’d had one not only knew exactly how and when they’d done it, but reported it was agony. This didn’t tally with my experience, as I couldn’t think of any recent activity during which I’d hurt my back, or placed strain on it, and I hadn’t had particularly bad pain, beyond the generalised aches and pains I’d been having for a few years.

It was only when they scanned for the supposed ‘slipped disc’ and couldn’t find it, that it prompted further enquiry. I actually had a cord lesion, which is much harder to see. They then scanned my brain, and found another half dozen in there!

Looking back, I conclude I probably had it years, but early symptoms were quite minor and inconclusive. I particularly remember having frequent minor sprains and strains, which was odd for someone young, but not particularly sporty, but these were put down to bad luck, and not to any underlying pathology. I now think abnormally high muscle tone, caused by the MS, was making me more prone to injury - my muscles didn’t have enough flex in them. It’s not normal to pull a hamstring whilst getting up from the sofa, is it?

Good luck on the 19th - I hope you get somewhere!

Tina

Hi just a quick update. Managed to get to see my GP yesterday after being in a lot of pain and very fatigued over the weekend.

She’s decided to refer me to a neurologist so just waiting for an appointment now. Hopefully the waiting list won’t be too long.

It’s great you have been referred. Waiting game for you now :slight_smile: