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ME to MS?

Hi all

I was diagnosed over 4 years ago with ME by my GP. The main symptom i reported to her was the fatigue. It seems when you visit your GP, you are encouraged to only share one ‘ailment’ and as fatigue at that time was the main syptom that was the one i spoke about and was not asked if i had any other symptoms. I was diagnosed with ME fairly quickly. Over the next few years i had visited the GP on numerous/various occasions with other symptoms (pins & needles in left hand arm, muscle twitching, fatigue made much worse with hot weather, incontinence, mad itching but no rash, balance problems…legs won’t do what i want, dropping things,blurred vision, tight chest, rubbish memory/word finding, heart palpitations/pain) so you can see why i wouldn’t tell the Gp about them all at once) but not once did she ever suggested it could be MS until now. Has anybody else out there had a similar experience? I am currently waiting to see a nuero (albeit, after nearly three weeks thought, i’ll just check to see if my Gp had heard anything, as i had not) to be told the GP had forgotten to send the referal! That was now another 2 weeks ago…still nothing. One more question (Sorry! not sure if this would be down to MS) i have had severe back pain off and on for a few months (muscle spasms)…unable to move my legs at its worse…could this be linked?

Sorry for such a lengthy message, but any advice would be most appreciated.

Hi Cera

I have visited my GP over the last 3 years for all of the symptoms you have mentioned.

All of my symptoms were assessed and investigated individually at first and no causes were found. It wasn’t until I changed doctor and decided enough was enough that I got anywhere near to a diagnosis. I obtained a copy of my medical records and made a timelime of all the problems I had visited my GP about over the last 3 years. I took the timeline to my new GP and he immediately questioned why MS had not been investigated.

I was referred for an MRI which came back clear - MS was pretty much ruled out from that point. However, I was referred to a specialist neuro department in Edinburgh where various other tests were carried out. It was eventually decided that I suffer from Peripheral Neuropathy. Medication was prescribed and since then my symptoms have significantly decreased.

There are lots of conditions which cause neurological symptoms, unfortunately sometimes it is not always clear what causes them.

I did wait approx 4 months between referral and my first Neuro appointment which is not unusual.

I am not a doctor but I suppose if there was muscle weakness, spinal damage or a lesion on the spine, moving your legs could aggrevate this.

Don’t over think things and try to put it to the back of your mind. Things may not be as bad as you think.

Good luck x

Thanks for your prompt reply.

Hello and welcome :slight_smile:

There are a fair few people with MS who started off with a diagnosis of ME, however there are literally hundreds of conditions that can cause MS-like symptoms, some of which are relatively easy to treat, so it’s perfectly possible for you to have something completely different.

While you’re waiting for your neuro appointment to come through, I recommend having a thorough battery of blood tests: some of the things that can mimic MS are shown up in blood tests, e.g. vitamin B12 deficiency or thyroid problems.

Muscle spasms are a fairly common symptom of MS, but they are one of the things also found in loads of other things so it doesn’t really help to narrow the field down much :frowning:

I hope the GP has got the referral off properly this time(!) and that you hear soon.

Karen x

Hi Karen

Had lots of blood taken already. B12 & thyroid came back fine. Only test that was raised was CRP (18) it had been higher before this last test.

Thanks for your reply.

Cera x

Hi Cera,

Yes, I had a similar experience.

I became unwell in 2003 with extreme fatigue,clumsiness, hot/cold and flu like symptoms, eye pain/light sensitivity, palpitations and sleep problems (all made worse by exercise/temperature) and was told for 5 years that it was due to anxiety/depression. I had to give up work in 2008 and was given a diagnosis of ME/CFS.

I then had problems with walking and balance and ‘buzzing’ in my left foot and hand. My GP refused to refer me to a neurologist and told me that I didn’t have MS and it was only when my Mum went with me to see him (she has MS) in 2010 that he agreed to refer me for a private appointment.

I was diagnosed last year.

As Karen said, there are lots of things which can mimic MS symptoms (including ME) but a good neuro will know what tests to run. I would persevere and give your surgery another call.

Mags xx

Hi Cera, I also was dx with ME first. I was lucky and saw an ME specialist who sent me for a brain MRI… that was the beginning for 2 year journey to dx of MS.

As others have said, lots of other things can be causing the symptoms… and ME itself is a very debilitating condition… so keep an open mind. At least you are on the way to getting an MRI… it can take a while to get an appointment… but hopefully you’ll have some answers soon.

Pat x

Thank you Mags and Pat

I normally am a positive person, accepting things for what they are…think i’m feeling particulaly low at the moment coz i’m in a lot of pain and it’s not understood. I had to cut my hours at work (which i love) and have lost 37lbs, thought it would help with things not make things worse. I’m sure i’ll feel better soon :wink:

Thanks again all

I’m sorry you’re in so much pain hun. I’m not surprised you’re feeling low, it does grind you down, no matter how positive you try to be. Can you not ask your GP for some meds to help with it (or different ones if you’re already on them and they aren’t working)?

I think it’s amazing that you’ve lost so much weight, so well done you! I do think you need to be a bit more forgiving of yourself though. Having to give up some hours is bound to make you feel a bit low, especially if it feels like you’re ‘giving in’ to your illness. Whatever is wrong with you, it may take some time to get a firm diagnosis, so chin up hun, you are still working and trying your best. You sound like a strong lady to me, so don’t underestimate yourself and know that we’ll be here to offer our support if you need it.

Mags xx