Hi everyone. I don’t have MS, but am experiencing a whole load of symptoms that point to it. Back story: diagnosed with ME/CFS 10 years ago; severe to mild over those 10 years. I’m used to bone-cryshing fatigue, weak muscles and brain fog but the last few years has seen a great improvement, to the point where I started work again in April this year, 30 hours a week.
I have previously been diagnosed with bladder issues (retention) and an essential tremor, both being linked to my ME, apparently.
Three weeks ago I had a very heavy head cold -possibly COVID - and it’s left me with the worst ME symptoms I’ve had in 2-3 years, but - there’s a difference and some new symptoms that I’d like your advise on:
Usual:
Fatigue
Brain fog
Muscle weakness, especially legs
Tremor
Bladder issues
Blurred vision in the mornings
New symptoms:
The leg symptoms are strange this time - not just weak, but wobbly and stiff at the same time. I’m struggling to lift my left foot at the correct time, especially on a slight incline. It makes me need to think about walking, rather than just doing.
I’ve experienced pain in and around my rib cage, lasted 3 hours last time, felt like a squeeze and sharpness when breathing in. Very uncomfortable.
I’m wondering if this is all attributable to my ME, or if I need to talk to my GP about this?
Thanks in advance.
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I would definitely speak to my GP!!
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Well it can’t do any harm to speak to your GP: it’s obviously concerning you. So you could try to get to the bottom of it.
The thing is, the symptoms you have can probably be caused by a wide range of illnesses - ME, other things, or MS. The point of a GP is to get to someone with an open mind, who is aware of the chances of it being one thing or another.
MS also has a wide range of symptoms - and it’s not diagnosed on symptoms alone. So if they do think that’s a possibility, you’d need to see a neurologist and have MRI scans.
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Hi all, so I went to my GP who was very good, listened to my concerns then did the standard neurological tests. Results were no right knee reflex, barely any left knee reflex, right arm weaker than left, dulled touch sensation on right, and positive Babinski plantar on both feet. Because of the Babinski being present, they have referred me to neurology at Addenbrookes hospital. Initial consultation is April 2026, so that’ll be a fun wait 
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The waiting can be so hard. I found the best thing for me was to try to distract myself and focus on the good things in my life. Different things work for different people.
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Update - neurology appointment has been pushed back to May 2026 so even longer to wait. Since my GP appointment in November I’ve been signed off work on and off since mid-October with the relapses (ME or otherwise). The most worrying symptoms at the moment are the new leg weakness and instability issues, which get worse after walking 10-15 mins. Also experiencing a weird sensation where I go to do something or speak and my brain takes a second or two to catch up. This causes me to be unbalanced, stumbling if turning for example, struggling to get my words out of speaking. Today there were particular words I found really difficult to get out. These are all new things and it’s getting worse. Currently trying a phased return to work but it’s not really working 
likely I’m going to resign from my job in the next few weeks, taking into account reasonable adjustments etc.
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Hi would it be possible for you to have a MRI scan of your brain and spine , privately ?
At least then you should get some answers as to what is going on.
I did this and they found lesions on my brain and c spine. I was immediately transferred to my Neurologist NHS list and given access to a MS nurse.
Please do not resign , if anything let your employer let you go , if they feel you’re not up to the job , after reasonable adjustments have been made.
Ask to be referred to your employers occupational health.
You may find some of your symptoms resolve themselves , if you’re having a relapse.
Take care
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Thanks for the reply. Unfortunately I work for a micro business - just 8 staff - so there’s no HR department or occupational health per se; there’s sickness policies etc but sadly if one of the team goes down it puts a big strain on everyone else to pick up the slack. I’ve been off work since October, so it’s a long time and to be honest, there’s not much fight left in me to stay in the job.
When you’re fighting to get out of bed, fighting the pain, fighting the wobbly legs, fighting the fatigue, fighting the daily commute - there’s nothing left in the tank once you’re at work. Sadly I can’t go down the private health route either so will have to wait my turn.
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I’m sorry to hear that.
You need to put yourself first and if you can’t work , don’t , but please do not resign.
Hopefully you may recover (from what sounds like a relapse ) in the future.
Your employers have to try to help you and make reasonable adjustments.
You don’t say what your role is , but could you work from home at all or reduce your hours ?
Have you applied for PIP ?
You can claim whilst you’reworking or not. It’s based on how your condition effects your daily life.
I’m really sorry you’re going through all this at the moment.
I’ve been there but I’m lucky to have Income Protection cover as an employee benefit as I work for a large Company.
Should any more health issues arise make sure you contact your GP or go to A & E. It’s possible they would order a MRI scan at A & E.
Make sure everything is documented.
Wishing you all the best
Clare
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Thanks Clare. I’m a facilities manager, so need to be on my feet for a lot of the day. Plenty of meetings too that need my concentration. Neither of which I can do at home or particularly well in the office! I asked for five reasonable adjustments, and have secured just two of them - no physical work and working from home one day per week. But I needed to have all five to stand a chance of recovery. I’m working 30 hours/week normally but now down to 15 hours and still no progress. I hadn’t thought about claiming PIP, I’ll take a look thank you. As for future work and resigning - I have something I can do working for myself from home, which I was doing before this job; so I’ll be going back to that for some sort of income.
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