Peripheral Neuropathy ? Legs will not work. All sympt... - NRAS

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Peripheral Neuropathy ? Legs will not work. All symptoms as in neuropathy lists.

Micro profile image
25 Replies

I was tested one year back - results, normal for my age. I can barely shuffle about. G P says “dont come back unless for something new.”

Symptoms; burn, tingle, big ache, weak feeling even though I’ve exercised and muscles cannot be so weak. Toes were numb a tear ago. Less so now. It’s not like Restless Leg, Im not compelled tomove my legs.

Had Fibro 30 plus years. Trouble with lower back facet joints. I had to research myself and ask for Spine injections myself for that also.. they have improved my lower back pain, but I had it so long before treatment that my walking , balance became affected.

I have no life between the facet joint pain which is returning and several years of these leg symptoms. [have got more R spine treatment booked but it doesn’t change the leg symptoms anyway.]

Does anyone know if likely my own Peripheral Neuropathy diagnosis still fits in spite of the test results ?I don’t know where to go from here. I have no life left.

Feel I can’t return to my GP [who runs the practice[. At wits end really.

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Micro
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25 Replies

I was sent for special tests and was diagnosed with peripheral neuropathy. The burning/tingling/ numbness was a constant for me. I was prescribed pregablin which has made a huge difference. I can’t diagnose you but you could push for tests. If Gp refuses complain. Someone on here should be able to be able to tell you the best way to complain. Good luck

Micro profile image
Micro in reply to

Thank you so much.Do you remember what the tests were,

which type of Doctor ?

ie Neurologist or Rheumatologist etc.

NHS/ private ?

I’m in Yorkshire, England.

in reply to Micro

It was on the nhs . I had tests done under the neurologist my Rheumatologist referred me after my Gp examined me he sent me back to my rheumatologist. The tests used electrical stimulation that recorded my response to stimulation

Micro profile image
Micro in reply to

Thank you. I think that was the nerve conduction test, like you had, but mine was explained as ‘normal for my age’.

Madmusiclover profile image
Madmusiclover

Ask to see a different GP at the practice? Ask GP to refer you? If you can afford it see a private GP or consultant? Phone 111 out of hours? Go to A and E? You poor thing. I’ll keep thinking.

Micro profile image
Micro in reply to Madmusiclover

Thanks for your common sense, lost mine it seems ! not sure my reply registered yesterday.

helixhelix profile image
helixhelix

So many possible causes, so I wonder if they have all be checked - eg diabetes?

What tests did you have that “were normal for your age”.? (And I so hate that expression!). And what exercise are you able to do?

mayoclinic.org/diseases-con...

Micro profile image
Micro in reply to helixhelix

Thanks, I’ll check this.

Micro profile image
Micro in reply to helixhelix

Appreciate your reply. It was a Nerve Conduction Test, electrodes on lower legs.Exercise….walking at all is very difficult.

I have managed some seated exercise mainly leg raises. My legs feel stronger cos I can do more leg raises, but ache, buzzing, weakness etc still no change when I walk. I can feel the sensations whatever I am doing. [Grrrrr !

helixhelix profile image
helixhelix in reply to Micro

It would most likely have been large fibre nerve conductions tests, which only look at the larger things. It is possible that you have small fibre neuropathy, which can be associated with auto-immune disorders. And is of course more difficult to diagnose…especially (personal opinion) if you are of a certain age when young doctors can be a bit dismissive.

Do you have a diagnosis of an auto-immune disorder?

I wonder whether in this circumstance a letter to your GP’s practice manager might provoke better treatment? Saying that you feel that the care you have been offered is sub-standard and would like to be referred to a different person/specialist.

DelicateInput profile image
DelicateInput

This is usually a symptom of diabetes (advanced). See the diabetic nurse and get 3-month blood test for diabetes done. The nurse will also do any other tests appropriate - they tend not to be as penny pinching as the GPs who run the practice financially and a lot more chatty. The nurse might also suggest seeing a different person or a referral.

I had numbness in my left lower leg when I first had symptoms of RA. That was 2014/15. I had a very bad flare this summer and had numbness again but in both legs.

If you do see a private rheumy as suggested in other posts, make sure it is one who is an NHS consultant because some of the tests can be very expensive. I saw a private one and he wanted to do a brain scan - at a cost of £5,000+.

Good luck - it must be very worrying.

chrisj99 profile image
chrisj99

I have similar problems. I am diabetic as well as rheumatoid. I was diagnosed with nerve damage probably caused by the diabetes. Please get tested, more people aged over 60 get diagnosed with diabetes than under.

Micro profile image
Micro in reply to chrisj99

Thanks> I’ll find out ref this.

Retirednhs profile image
Retirednhs

The RA dept would be the place you need to get the answers l have neuropathy and balance problems from similar symptoms podiatry would help as well perhaps orthotic aids like special insoles or shoes help with balance

Micro profile image
Micro in reply to Retirednhs

That is helpful, thanks.

nomoreheels profile image
nomoreheels

Hiya Micro, welcome to the NRAS site. I have RD not fibromyalgia but had peripheral neuropathy around 5 years ago, accompanied by carpal tunnel. I suspected a particular medication as I'd had no issues prior to starting it. My Rheumy referred me to a Neurologist & I had nerve conduction/nerve velocity tests, I then halted the med & a short while later had repeat tests. It transpired it was the med & eventually my symptoms disappeared. I've more recently had what I describe as a buzzing in my legs, which can't be related to the previous culprit as I’ve been off it ever since the repeat tests.

You have unresolved symptoms so have every reason to see your GP, his/her comment was very unhelpful. "Normal for your age" isn't a valid reason, not everyone has the same symptom at whatever age so how can it be considered “normal”?

I hope you find the cause &, more importantly, are relieved of your symptoms.

Micro profile image
Micro in reply to nomoreheels

Thanks for your info and support.

Mmrr profile image
Mmrr

You could write to the practice manager saying you are unhappy with the GP and are requesting an appointment with a different GP to discuss your health issues.You are unwell and require to be seen.

Micro profile image
Micro

Thanks, I’ll have to gird my loins and go back to the practice.

Micro profile image
Micro

I’ll have to go back, see a different GP. This GP is ok so long as he knows how to resolve a problem quickly. I have the impression he thinks I’ve had my share of help over the years, but that doesn’t help me get my life back !

Ascidian profile image
Ascidian

I was investigated for MS several years ago because of numbness and tingling in arms and legs, and other, strange sensations. By the time I saw the neurologist, things had settled down. My MRI didn't show any lesions and the nerve conduction tests came back normal. The only thing they found was some degeneration in my cervical spine. The scans were sent to a specialist who said that the degeneration wasn't sufficient to cause my symptoms. Fast forward about 3 years, and I was having severe problems with my hands and then other joints and was finally diagnosed with psoriatic arthritis. So, my own theory now is that I perhaps had inflammation in the neck ( i definitely had neck pain and stiffness, which caused nausea and dizziness) and that the inflammation pressed on the nerves....

Micro profile image
Micro

Thanks. All these replies are so supportive.I had an MRI a few years ago and do have lesions on my brain. Eight months later they decided to call these lesions ‘ Ischeimic Aetilogy’, [wrong spelling] and said they were not in the pattern linked to M S…..

Hobbledehoy profile image
Hobbledehoy

Sorry that you’re suffering. I wouldn’t like to comment about your general medical picture, but can tell you something about the awful legs, for I get it too & it drives you mad, doesn’t it. I couldn’t sleep at all. My dear doctor prescribed Ropinirole 0.5mgs 1 - 2 nightly for me to try and it’s working! Good luck honey.

I also suffer from FM as part of my Enthesitis diagnoses, which I presented to the rheumatologist and she confirmed was correct. This was all delayed because my JIA was never recorded on my GP cards and 2 years worth of letters from the consultant had gone "missing".

Anyway back to your issue and another comment, I too have found Pregabalin to be excellent in pain suppression, I can actually function now and not be permanently crippled, it will happen one day but at least it has been deferred for the moment.

I also have a bi-annual caudal epidural with a steroid for a prolapsed disk.

Micro profile image
Micro in reply to Stephenlangtonriley

Thanks.I previously had Pregabalin. Maybe it was suppressing the leg symptoms but I didn’t know at the time.

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