1. < Neuropathy

Peripheral Neuropathy life changing

Posted by orsons @orsons, May 3 7:08pm

It all started with pins and needles in one foot. I left it but finally went to hospital and they said my thyroid was underactive. So I was put on tablets to regulate my thyroid but the pins and needles remained and then went to other foot as well. I went to neurology and had MRI of head and back and later that year had another MRI but apart from stenosis there was no compression. I was very ill back in 2020 with other ailments which remain which is all rather strange. This neuropathy has been life changing. I take maximum dose Pregabalin but it doesn't really help save if I come off it the pain and discomfort could become worse. I have tinnitus and gastric problems digestive issues. I am going to see a specialist to see if I might have autonomic neuropathy which I hope will be ruled out. I just cannot accept what has happened to me.

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jlf2 | @jlf2 | May 15 8:33am

I waited as long as I could till I had mine, I could no longer walk on my left leg before I had mine done. And now 2years later I’m walking just fine on my replacement. It still hurts sometimes, but it’s not as painful as it was before the surgery and I can walk, I work on my feet all day long. I’m glad I had it done, But I put it off as long as I could.

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bowersra | @bowersra | May 15 8:48am
In reply to @orsons "I had Nerve Conduction Test and EMG. They could not confirm or diagnose Peripheral Neuropathy. I..." + (show)
@orsons

I had Nerve Conduction Test and EMG. They could not confirm or diagnose Peripheral Neuropathy. I then saw a private neurologist who was arrogant and I really did not like him at all. He just said it's probably Small Nerve Fibre Neuropathy but there isn't a test to validate that here or anywhere else. That was a complete waste of time. They probably hate the fact they don't know why it happens if there is not a spinal issue although I have Stenosis in spine. I feel they have missed something out but don't care that much either. I saw a lovely Osteopath who didn't even charge me for the consultation. He said he felt they have missed something out. Try telling the Neurologists that though.

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But there is a test for small fiber neuropathy it’s called skin punch biopsy. Easy to take …..

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2 replies
bowersra | @bowersra | May 15 8:51am
In reply to @bowersra "But there is a test for small fiber neuropathy it’s called skin punch biopsy. Easy to..." + (show)
@bowersra

But there is a test for small fiber neuropathy it’s called skin punch biopsy. Easy to take …..

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Also… I know what you mean by neurologists not doing anything to help with this…

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1 reply
bettyg81pain | @bettyg81pain | May 15 10:17am
In reply to @brotherchuckles80 "May I please ask how it has affected you toilet regime? I ask because I have..." + (show)
@brotherchuckles80

May I please ask how it has affected you toilet regime? I ask because I have been having a constipation issue. My Gastroenterologist say that it is IBS. After your comment, I am wondering if it is my peripheral neuropathy. Thank you, Charles aka brotherchuckles80.

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I think its the darn drugs that we are taking for our PN!

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roslyn2314 | @roslyn2314 | May 15 12:54pm
In reply to @gilly08 "I have what I call twingling, which is a mixture of twitching, tingly, prickling, sometimes burning..." + (show)
@gilly08

I have what I call twingling, which is a mixture of twitching, tingly, prickling, sometimes burning in my legs, usually when I am sitting down or lying down in bed. They sometimes feel like tiny electric shocks sometimes. I've had this for ten years. I don't have any symptoms in my feet or upper limbs, apart from the odd twitch. I can walk for miles and no symptoms but as soon as I sit down the horrible twingling starts.
I had all the nerve conduction studies 10 years ago and was told I may have benign fasciculation syndrome. I managed to live with this for all these years, after the anxiety of some awful diagnosis had subsided, but now they are back worse than ever. I cannot sit down or lie down without the above symptoms coming on almost instantly. I am wondering if I have a peripheral neuropathy rather than BFS. It really is a problem even though I only have it in my legs....mostly.

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Consider Restless legs Syndrome. Sifrol gives amazing relief if it is RLS

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1 reply
orsons | @orsons | May 15 1:09pm
In reply to @bowersra "But there is a test for small fiber neuropathy it’s called skin punch biopsy. Easy to..." + (show)
@bowersra

But there is a test for small fiber neuropathy it’s called skin punch biopsy. Easy to take …..

Jump to this post

Where I live there is no test of this kind which is ridiculous really. London is where I will be going in August but it's a test for possible Autonomic Neuropathy which I'm hoping will be ruled out. The neurologists I have seen one of which was private just say Smal Nerve Fibre Neuropathy. Maybe you should have trained to be a neurologist!

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1 reply
orsons | @orsons | May 15 1:16pm
In reply to @bowersra "Also… I know what you mean by neurologists not doing anything to help with this…" + (show)
@bowersra

Also… I know what you mean by neurologists not doing anything to help with this…

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They can't really operate on literal nerves. Something that future scientists will work on no doubt

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mlmbhsrnpb3 | @mlmbhsrnpb3 | May 15 3:23pm
In reply to @bettyg81pain "Did you purchase it??" + (show)
@bettyg81pain

Did you purchase it??

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I did buy Ora brand. I did not buy the largest but my whole body can sit in front of this one for 20 minutes daily. It took about a month to show any results.

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mlmbhsrnpb3 | @mlmbhsrnpb3 | May 15 3:32pm
In reply to @orsons "Yes the peripheral nerves affect things like body temperature heart rate blood pressure bowel and urine..." + (show)
@orsons

Yes the peripheral nerves affect things like body temperature heart rate blood pressure bowel and urine movements etc. I was told I had IBS but I was told by a GP when I questioned how they came to that diagnosis of IBS was because they don't know what's causing it so give it a name mine was IBS......you couldnt make it up but they do in some cases!

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I too was told I have IBS but now am questioning that diagnosis.

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orsons | @orsons | May 15 5:05pm
In reply to @dlydailyhope "@erikaramey It sounds like you have a vascular issue that may be PAD and affected by..." + (show)
@dlydailyhope

@erikaramey
It sounds like you have a vascular issue that may be PAD and affected by small fiber neuropathy (SFN). SFN needs to be diagnosed with a skin punch biopsy and SFN can affect heart/cardiovascular system, lungs and digestion. The blue coloring and coldness of your feet makes me think of Reynauds which is autoimmune. My understanding is SFN can be autoimmune, too. You may want your blood tested for cardio lipid autoantibodies which means you may be more prone to blood clots (Antiphospholipid Syndrome). I had these autoantibodies show up in my bloodwork by a rheumatologist in 2017 and 2019.

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I asked to be referred to a rheumatologist but GP said my blood test ruled
that out! Maybe when I see Dr Hadden who is a specialist in the Peripheral
Neuropathy field he may shed some light. I will have a skin biopsy as well
on same day. It's to see if I may have Autonomic Neuropathy,........I am
hoping that will be ruled out.

Verna

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