Could this be MS or am I being stupid?

Hi all. I have recently been diagnosed as suffering from chronic fatigue syndrome by my GP, because I have suffered from frequent bouts of extreme and excessive tiredness for many years now. However, I have been a bit worried about the possibility of MS recently, as I have a few other symptoms which would seem to fit with that diagnosis (I haven’t mentioned these additional symptoms to my GP yet). These are:-

  1. Recently I’ve noticed that my short-term memory has been getting bad, and I’m frequently getting told things like “I told you that yesterday” or “we spoke about that earlier”, and I’ve got no memory of the conversation at all.

  2. My left arm feels weak sometimes. Not so bad that I drop things or anything, just a weird kind of weakness like you would get after carrying something heavy for example.

  3. I had a really bad headache in the night the other night (although I had had some alcohol the evening before ) and it was so bad that it woke me up a couple of times. Then when I woke up in the morning, the vision in my left eye was blurry for about 5 minutes. I put this down to the fact that I’d probably just had a migraine

  4. Sensitivity to temperature - I feel cold all the time. The warmth from having a bath can make my tiredness really bad and I quite often spend hours asleep in the bath against my will!

I know all these symptoms are a bit vague and could be attributed to a million and one things, but I just wondered what your opinions were on whether I should go back to my GP and ask about MS. I don’t want them to think I’m a hypochondriac, but obviously I don’t want to just ignore the symptoms if it could be something bad.

Thanks for listening!

Hello there My advice would be to go back to the GP, and just explain your symptoms. Advise you didn’t want to mention before as you didn’t want to seem like a hypochondriac, but don’t mention MS. See what the GP concludes first. Keep us updated & good luck. Jacelyn x

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Hi I agree with Jacelyn, go back to your GP but dont mention MS let him/her make there opinion first. Keep us informed. xx

Hi all! I haven’t been on here for ages, but I’m still having some issues. Since I last posted, I’ve still been suffering with bouts of really bad fatigue, but I’ve also had a few new symptoms. I occasionally have what someone on another thread on here told me is myoclonic jerks. I have also had a couple of bouts of bad hip pain and an episode of numbness/weakness in my right leg, which probably lasted for a couple of weeks. I had stiffness in my legs off and on at the same time as the numbness/weakness, so although I could still walk, sometimes it made me walk awkwardly. I mentioned the hip pain to my GP in one appointment and then, during a different appointment, I mentioned the leg numbness/weakness. She put the hip pain down to something called trochanteric bursitis (basically inflammation around the hip joint), and just told me to keep taking ibuprofen. She said the numbness/weakness must have just been a nerve in my back being pinched for some reason, and that, because it has gone away, it’s nothing to worry about. Since that appointment, I’ve had one more odd symptom. A couple of times when I went to pick my son up from school and it was really cold, once I’d walked in the cold for a bit my hips and legs felt really odd, like they were all brittle and stiff. It almost felt like the hip joints weren’t in the sockets properly or something (sounds weird, but that’s the only way I can describe it!). I couldn’t help but walk weirdly, because it just felt like my legs and hips weren’t moving properly, and I was really embarrassed! Luckily my husband was with me, so I held on to his arm, which helped a bit. This has worried me a bit, but I don’t feel like I can keep going back to the doctor with each new symptom, especially as she doesn’t seem concerned, as it makes me think I’m worrying about nothing and maybe reading too much into symptoms that other people might class as relatively “normal” (i.e. maybe some people would say that getting stiff in cold weather really isn’t that unusual). Anyway, just being able to talk about my concerns helps, so thanks for listening to me blabber on!

Hi, I can only echo the advice you’ve already been given…go to your GP with you concerns. If you’re still not happy with what she says you can ask to be referred to a neurologist, maybe then you’d get some answers. Be prepared for a long road ahead with lots of tests…MS is notoriously difficult to diagnose.

Good luck

Rosina x

Before all your symptoms started did anything happen to you, a bad virus or similar? What you describe could be M.E. (cfs). My daughter has M.E. Myalgic Encephalomyelitis and has very similar symptoms to yourself. It has very similar symptoms to MS. Also look at fibromyalgia, headaches, hip pain, cold sensitivity etc.

You obviously have something going on, it the doctor needs to sit down and find out what it is.

The thing is though you need to sit down yourself, and really think when did it all start and what the main symptoms are…the ones that really impact on your life. Your not going mad hun, something is happening and it needs addressing. xx

You will be shocked at how similar M.E./MS/FIBRO/LUPUS/LYMES etc are to each other lol.

Hi Goldengirl63. Thanks for your reply. One of the doctors I’ve seen said he thinks I have chronic fatigue syndrome, so maybe that is what all my symptoms are due to. I suppose it’s just that when I get a new symptom (like the legs and hip stiffening up in the cold) it makes me worry that maybe there’s more to it than cfs, but maybe that really is all it is.x

Thanks Rosina. The thing is, when I get a new symptom, it only seems to last for a certain period of time, then it will go and eventually I’ll get a different one, so I don’t know if that would really fit with MS? What do you think? The only symptom I seem to have very regularly is the extreme fatigue and exhaustion.

You’re asking an impossible question, nobody here can tell you if you have MS or not, only a neurologist could do that. So if you’re still worried you really should go to your GP & ask if she can refer you to a neuro.

Rosina x

The cold makes my daughters legs stiffen up and yes she gets a lot of pain in her hips. The symptoms for M.E. are very transient as well…can come and go.

You should google Hummingbird M.E. its full of stuff about M.E. (I DONT call it CFS). Chronic fatigue syndrome part and parcel of many diseases its not a disease in its self but a symptom.

Like i said something is obviously going on, and you need some sort of reassurance. If it is M.E. it usually starts with a virus, my daughters was pneumonia and trouble with her relationship.

She is in remission now though which is good.

I think personally as you have the odd things going on perhaps just keep a diary for now and write down your symptoms, and what happened just before etc (like cold), then just see how you go for awhile…the trouble is once you start going to the GP with odd things they take you less seriously as they are so busy they dont have the time and thats not fair to you at the moment so if you can still keep going ok just see how things pan out.

Big hugs. x

Hi, firstly I agree with Rosina’s comment. I’ve also found it useful to keep a symptom diary and then take a summarised version - what each symptom is, when it started, how long it lasted or is it ongoing - to each appointment. Avoid mentioning MS. I did and they’re now bending over backwards to steer me away from the idea as they’ve no proof. All I have is a very strong gut feeling but I admit I could be wrong.

I have similar symptoms to yourself - fatigue, poor memory, what I call ‘numbishness’ in my left side, I sometimes walk funny when I’m too tired, hot or cold and I have myoclonic jerks. The first neuro I saw diagnosed me with Functional Neurological Disorder (this was before the onset of the involuntary myoclonic jerks and some eye issues) and recommended treatment via CBT (a year’s wait, my GP declined) or CFS/ME services (only an 11 month wait…haha!).

I had an MRI which came back clear. The second neuro doesn’t want to label it anything but did send me for a Visual Evoked Potentials test, for which I am now awaiting results.

So, I’ve got one foot in limboland and the other in the fuzzy realm of Chronic Fatigue/ME land. The medical profession like to call it CFS whilst patients often prefer ME. I am just finishing a course of group therapy which has been really helpful, led by an amazing OT.

All I can suggest is to keep a general track of your symptoms, don’t get too obsessed over them…and maybe ask your GP to see if you qualify for a local CFS/ME therapy course? Wishing you clarity :heart: