Leg and Fatigue

New diagnosis and before diagnosis
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Hi
I am new here and getting a bit panicked about some symptoms I have actually had for a good while. I am 39 and female.

I have been diagnosed with chronic fatigue and I also have anxiety, which isn’t particularly helping.

So with the chronic fatigue I have brain fog, difficulties concentrating and exhaustion. I get sound sensitivity and a lot of pains and aches.

Recently this summer I was getting a lot of chest tightness around the lower chest on exercise. Generally my fatigue gets worse the hot weather or if I have stress or overdoing things.

In 2014, I started having problems with my right leg and arm. Mainly pain and numbness. I had MRIS of my lumber and cervical spine. Lumbar was clear. But I had nerve conduction studies on my L5 root was affected and my power on right leg was affected. They then said it may have been a protrusion that had vanished. Cervical showed C5/C6 protrusion, which explained my arm and neck pain and radiculopathy - they pretty much went after a few years. So that seemed accurate for the neck/arm.

Over the years the weakness in the right leg has become more pronounced. I am more clumsy and keep catching the foot of that leg on unevenness of pavement and fell flat on my face last summer. I still get altered sensation and tingling on that side mostly. But also burning pain after going for a walk and symptoms can then feel worse. I also have gait issues now that weren’t present in 2014. I ignored the leg for years because I had a seriously sick and later dying husband and then grief to deal with.

I tried 12 months of video NHS physio (due to lockdown) which helped built some strength, but didn’t resolve gait or weakness or numbness, they just discharged me after sessions were over. So started seeing a private physio face to face. She seemed concerned about the combination of my symptoms and wants my GP to refer me back to a specialist. I have very brisk reflexes in my knees, noticeable mild weakness in the right leg, altered sensation and Babinsky’s sign with knee flexion and some tenderness in lower spine.

I am concerned that because nothing was in the lumbar scan a in 2014 that actually the neuro symptoms may be coming from the brain and might need a brain MRI just to rule that out as well as a new lumbar scan.

GP has simply referred me to the local specialist MSK service (probably a 3-6 months wait), which doesn’t even have a neurologist for an assessment - just advanced physio practitioners. I am worried it will just be dismissed because of my chronic fatigue and anxiety and even if they do think there may be a neurological cause that warrants scans and other test, it will then take another 3-6 months to see a neurologist.

I am of course panicking that the symptoms could be something like MS, but of course I am not sure if they are and then I feel silly for worrying.

Thanks for listening.

Deborah

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Hi Deborah
Your account is spooky in its similarities to mine. Apart from being a man 20 years your senior! :stuck_out_tongue_winking_eye:

I was originally diagnosed with lumbar spinal stenosis about 10 years ago. Apparently I was a textbook case. They told me it would get worse (pain, numbness, loss of motor control) and when it was bad enough, come back to them when I could contemplate an unpleasant operation, long recuperation and a degree of risk associated with the procedure itself. Except they were wrong! I got diagnosed with Progressive MS last year and of course, an operation won’t fix it.

Sure enough, I have MS but a visit to an osteopath last year threw up that I may have been carrying around a trapped nerve around L4/L5. Finally the MS team came around to my way of thinking and this Saturday I’m having a lumbar MRI followed by an orthopaedic consult. It’s possible an issue down there could be masking the severity of my MS symptoms.

So, stick to your guns! Lesions in the brain = MS (probably) but it may not be the only thing going on… That’s one of the things that makes MS so hard do diagnose.

Best of luck,
Graeme

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Never feel silly for concerns about your long term health. Your symptoms could relate to a number of conditions so you need to rule things out and treat the actual cause. Working on the symptoms is box ticking and counter productive. It will cost the NHS a lot more to treat you if you have an undiagnosed progressive condition. In my opinion you have 2 options. 1: hassle like hell for a neuro referral 2: pay for a private neuro referral. Either way you need to know what is going on ASAP so that you might prevent, slow or reduce deterioration.
Good luck
Mick

1 Like
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I’m sorry to hear about your struggles and I’m glad you got the right diagnosis. Spinal stenosis would be unusual in my age group, but you never know it could be what’s going on now. Some Scans would be helpful and a proper neuro exam again. Hopefully I won’t have to wait too long. Everything had slowed down with the pandemic. Understandably. It’s hard to just sit and twiddle my thumb now that I’m realising a bit of physio isn’t going to sort out what’s happening on its own.

Hopefully they’ll get to the bottom of your nerve root entrapment soon.

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Thank you very much. It’s hard to pester the GP. But I shall try to make another appointment and see if I can get her to give me at least a private referral, so that I can use my cash plan to pay towards a private neuro consultation.

You’re right it could be a number of things and for all we know something else has happened in my lower back since 2014 that’s causing those symptoms, which is I guess why a new lumbar scan would be helpful.

I feel bad for neglecting this for so long, but worse health issues in the family got in the way. I thought I’d do physio for a year and it would all go away. But sadly it didn’t.

I’m still angry that the nhs self referral physios discharged me after 9 months of video physio and exercise therapy despite numbness, continued leg weakness and gait abnormalities without even a report back to GP to say I still had those issues.

This made me initially feel quite silly going to the private physio, thinking she’d say I was making it all up. But clearly I’m not making it up. Otherwise she wouldn’t have written to my GP to recommend further investigation.

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Update: The initial MSK service face to face assessment will be in 2 weeks time. So only a 4 week wait rather than months. Which is positive. If they won’t initiate further tests or referrals I may go private to get to the bottom of the knee hyperreflexia, leg weakness and babinski, as some of these are upper motor neuron signs as far as I understand?