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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

orsons | @orsons | May 14 11:53am

In UK you get free prescriptions when your over 60.

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orsons | @orsons | May 14 11:56am
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.

Jump to this post

You would need to get a diagnosis from a doctor.

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1 reply
bettyg81pain | @bettyg81pain | May 14 1:34pm

Oh my gosh!! I'm on 50mg and it makes me "loopy"!!! I wouldn't even be able to remember my own name much less anybody else's!! Keep us posted when you see the expert.

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bettyg81pain | @bettyg81pain | May 14 1:36pm

Tell me why a neurologist does the testing with needles-what can they determine with the results of the testing that will help?

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orsons | @orsons | May 14 3:28pm

I will post to everyone when I see Dr Hadden who is an expert in the field of Peripheral Neuropathy. It's to see if I might have Autonomic Neuropathy. This will require a skin biopsy. I am hoping he is the Jesus of curing this condition .........doubtful methinks

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orsons | @orsons | May 14 3:36pm

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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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | May 14 5:12pm
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.

Jump to this post

Welcome @gilly08, I can imagine that your symptoms have to be a little frustrating to say the least now they are back worse than ever. I wonder if it might help to look through the other discussions on benign fasciculation syndrome to learn what others have share helps them. Here's a search link that lists the discussions and comments by other members - https://connect.mayoclinic.org/search/discussions/?search=benign%20fasciculation%20syndrome.

Have you thought about seeking another opinion or help at a teaching hospital or major health facility like Mayo Clinic?

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1 reply
dlydailyhope | @dlydailyhope | May 15 7:27am
In reply to @erikaramey "I don’t know if I have PN or something else. All I know is that the..." + (show)
@erikaramey

I don’t know if I have PN or something else. All I know is that the balls of my feet and toes feel sort of numb also that I have this blue discoloratio. It’s an awkward feeling like I have sand between my toes and they feel always cold. It takes a while to thaw them out as I called when I go to bed.
I’ve had my genes in my legs worked on hoping that would help.
It’s like they clogged up my bad veins in order to reroute blood circulating through the good ones.
I can’t say that I have pain or even tingles in my feet just kind of numb and blue looking.
Started to see a podiatrist but so far the prescription of Capsaicin .075% hasn’t done anything for me. Next appointment in June.
Anyway does anybody else similar problems?

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@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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1 reply
gilly08 | @gilly08 | May 15 8:09am
In reply to @orsons "You would need to get a diagnosis from a doctor." + (show)
@orsons

You would need to get a diagnosis from a doctor.

Jump to this post

Yes I agree.
I worked for a neurologist here in the UK, which is a good thing and a bad thing. It can cause anxiety but can also alleviate worry when you know that serious diseases are progressive and don't get better for a time.
My symptoms are almost identical to how they started 10 years ago. I lived for years without hardly noticing them, just the odd twitch here and there, and then suddenly they are back as bad as ever.
I went to the physio for a shoulder problem and she gave me core strength exercises to do at home. It may be a coincidence but after doing these for a day or two, the fasciculations and sensory symptoms started again (bad). I now feel like I'm back to square one! Could it be the exercise that has irritated nerves. Who knows!

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gilly08 | @gilly08 | May 15 8:10am
In reply to @johnbishop "Welcome @gilly08, I can imagine that your symptoms have to be a little frustrating to say..." + (show)
@johnbishop

Welcome @gilly08, I can imagine that your symptoms have to be a little frustrating to say the least now they are back worse than ever. I wonder if it might help to look through the other discussions on benign fasciculation syndrome to learn what others have share helps them. Here's a search link that lists the discussions and comments by other members - https://connect.mayoclinic.org/search/discussions/?search=benign%20fasciculation%20syndrome.

Have you thought about seeking another opinion or help at a teaching hospital or major health facility like Mayo Clinic?

Jump to this post

Thank you for your reply.
I actually live in the UK

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