Pain Concern
22,211 members7,551 posts

Advice sought on peripheral neuropathy and doctors

I have suffered with uncomfortable feet with an unpleasant sensation crawling up my legs for well over a year. I had put it down to another auto immune disease that falls into the uncommon group so not a huge amount of information available other from those with the disease and their experiences. I mentioned the symptoms to my specialist who said that it was not related to my disorder and speak to the GP. On 24 August I saw a doctor who prescribed gabapentine for neurological disorder and oh the relief once the tablets had got into me. The specialist for my bile duct condition had no arguments against me taking the drug. I returned in October to have the prescription put on repeats only to be told by another doctor that I should try and use mind over matter for peripheral neuropathy (well at least I think that is what she was suggesting - I hope it was not that it is all in my mind!). Anyway I am on holiday and my feet and legs are so uncomfortable that I bought gabapentine in a chemist and immediately found the benefit. I have bought enough tablets for a couple of months giving me enough time hopefully to get an appointment with the first doctor rather than my named doctor who would not give me the repeat prescription.

I wonder have any of you experienced difficulties with you GP prescribing and should I be insistent. I did wonder if I was already having too much medicine in terms of cash for their budget but as I pay my taxes I kinda feel that the cost should not be a deciding factor in my well being.

I look forward to your insights

thank you

21 Replies
oldestnewest

I never had a problem with the prescriptions but I did have a problem with trying to find out what my situation was when I drop foot my partially blind in my right eye. While I googled it and guess what I either had Lyme disease or MS. Unlucky me I have MS. Oh I change my doctor right away after I found out that I have MS.

I say if you’re not satisfied with your doctor find someone else because if I had been diagnosed when I started saying there is something wrong who knows maybe I wouldn’t need a rollator or a wheelchair to get around.

And yes if it sounds like I am ticked off it’s because I am. I’m 58 out of Work pension HAHA if you work for the State you don’t get much my insurance costs more than what I make good thing my husband is still working.

Sorry about all that I just had to yell it out there.

Ok I’m done I hope I answered your question.

Oh by the way I also have that feeling with my legs it doable but some days it is so irritating

2 likes
Reply

Hi ssdw1958

I am sorry to read of your trials with the medical profession, it seems that there is something wrong with the training or the budgets which confine them (certainly this applies in the UK). A friend had MS and the doctor just said there is no cure learn to live with it - albeit that was back in the 70s but needless to say she changed to a more considerate doctor. I wish you well and thank you for your answer.

1 like
Reply

I am glad that your friend moved on with her doctor. I to moved on I felt wronged by that doctor. Especiallywhen I had to basically diagnose my self. I now have two competent Doctors a new PC And a neurologist I just need a cure for MS and all will be right in the world. Maybe some day. Have a good day.

Reply

ssdw1958

It is an all to often read/heard story of misdiagnosis or not being diagnosed at all. I waited nearly 10 years to get a diagnosis for my auto immune disease. Like many I wish for a cure for MS and for you, as you say may be some day. I wish you also a good day, thank you.

1 like
Reply

Foot drop is mentioned in my B12 deficiency book, a symptom of B12 Deficiency also. See - I have replied to ButterflyEi below.

Reply

Well if you have PN, it's a very difficult condition to cure, and you'll be lucky if it ever goes away, I've tried gabapentin and have been on pregabelin for over two years and I have the symptoms constantly, and it is not pleasant, and very painful, I don't go with the mind over matter scenario, it's an intense burning pain, and throw in some pins and needles, oh and a little depression, and hey presto everything is bright and rosie in the garden, er NOT!, it never relents and it's 24/7,365days for lifetime,and trying to find out your causes for your symptoms could be a mission in itself, there's numerous reasons why folks end up with PN,I'm fortunate that our NHS understands this condition and my GP is helpful with my prescription, even though I wish there's a magic wand that could make these symptoms disappear, I'm now into my 5th year and to say I'm thoroughly depressed with this condition, I'm afraid at my wits end with it, and I'm now on the verge of getting an appointment to get sleeping tablets, night time is not good, the twitching of muscles all the way through the legs,and trying to find "cold", spots in the bed for the feet, so the so called specialist is not really up to speed with this condition, you'll find most folk on here with this condition do suffer, but it's only when people like you come looking for information tend to give some insight into this painful condition, and hopefully they'll be able to offer you more advice, I wish you all the best for the future, cheers

1 like
Reply

On 300 mg Gabapentin 4x a day along with .50 mg Nabilone also 4x a day one needs the other to give me a bit of relief from the PN

1 like
Reply

Thank you Cb1963

apologies for the edit my mobile would not let me type a reply so had to wait for a PC.

Your reply has given me a better understanding and although I too enjoy the benefits of the NHS I cannot say that my named doctor truly understood the situation. I have an appoint with the first doctor who gave me a prescription for gabapentine and because of your reply I will be a little braver about my condition. Again thank you.

Reply

Well I would say that neuropathic or nerve pain is a likely diagnosis and gabapentin is often used to help. BUT I Am not a doctor I just suffer from a similar condition.

1 like
Reply

Did you see a specialist and have testing to confirm it is peripheral neuropathy? Has anyone suggested "Restless Leg Syndrome" (https://www.rls.org/) or Willis Ekbom Syndrome (https://rarediseases.org/organizations/restless-legs-syndrome-foundation/)? Gabapentin (Neurontin) has been great for my personal issues however I am limited to only 300mg daily. However I also have RLS and that is exacerbated by being overly tired, not walking enough during the day and anxiety. I was informed yesterday that Gabapentin is now considered a "controlled substance" in the U.S. Hope this helps. Blessings

Reply

Hi KidneyCoach

can I first say I love your handle, it conjours up a picture before I had read your post.

I have only been told this by the GP not a specialist. I will look at the links you have suggested and thank you for your valuable advice.

Best wishes

Reply

Peripheral Neuropathy is written about in my 'Could it Be B12' book by Sally Pacholok. PN has the same symptoms as Diabetic Neuropathy. Many Doctors apparently are over looking B12 Deficiency.

My Mum had feet that felt like she was walking on cardboard and gradually loosing the feeling in her feet, her Doctor said it was probably something to do with her diabetes, but later another Doctor told us Mum had B12 Deficiency.

Many are told they have MS, (same symptoms as B12 deficiency,) but later find they actually have a B12 deficiency, these people come onto the PAS (pernicious Anemia) site here on Health Unlocked telling their stories about being wrongly diagnosed.

I bought the book 'Could it be B12' and it shocked me by how many patients are being over looked for B12Def.

Have you had your B12 bloods checked ?

Beware there is a grey area on the B12 blood ranges that mostly gets over looked, so always ask for a printout of your bloods for your own records.

Reply

Hi Coastwalker

At a time when my mum, now sadly passed away, talked about discomfort in her feet she had dementia and her complaints about her feet were passed off by the GP as being down to the dementia. If I had known then what I know now I could have been more use to her!

I was diagnosed a couple of years ago with PA and have since regularly had my B12 injections which I top up occasionally when I feel the need. I had put my feet/legs problems down to the pernicious anaemia but after a long time of having the B12 shots I realised it must be something else and hence the diagnosis of a neurological disorder which came after diabetes being discounted following a blood test. When I first had my B12 checked the results were very low but it took a further 6 months before a doctor told me I had pernicious anaemia in a very matter of fact way that being fair blue eyed and over 60 made me a typical candidate for PA. I sometimes think that charm school could be added to the curriculum for some doctors. :-)

best wishes

2 likes
Reply

That is sad about your poor Mum too, dementia can be down to B12. We can only learn and help others in the future. Sadly my Dad had Parkinsons, Parkinsons Dementia and Supra Nuclear Palsy, but I was starting to wonder if all was down to B12 Deficiency only. I later found my answer in the B12 Deficiency Book, (sadly too late,) yes all 3 can be down to B12Def. Also someone asked about their Father with Supra Nuclear Palsy, I mentioned getting his B12 bloods checked and the lady replied to me a month later saying he did have B12Def.

Anything down to nerves and neurological can be down to B12 Def. (mentioned many times in the B12D Book.) Though Diabetic neuropathy and B12 Neuropathy are apparently the same symptoms, my late Mum also had diabettes, sadly made worse by Statins which pushed her onto kidney failure. Just a thought are you on a statin ? I read that Statins can bring on diabettes in 77% of women over menopausal age, or make diabettes worsen.

Are you also on the PAS Pernicious Anemia site, here Health Unlocked ButerflyEi ?

1 like
Reply

@Coastwalker

Yes have also visited the PAS site which has been helpful. B12 seems to be so important but it seems to be overlooked so much. Yes also to statins I have asked 3 different doctors if I can stop the statin each have cautioned against it because of family history. Sorry to read of your family suffering similar ills. My grandfather had Parkinson's it certainly makes you wonder.

Thank you for your words of wisdom and experience.

Reply

Good to hear you have been onto the PAS community ButterflyEi.

Please take a closer look at the statins, they can actually bring on heart attacks, strokes, dementia and altzheimers and more.

Take a look at 'The Great Cholesterol Statin Con.' by a Scottish Doctor, Dr Malcolm Kendrick. Cholesterol is NOT our enemy, 80% of cholesterol is in our brains, our body makes it naturally, so why lower it ? we certainly don't want to lower it our brains. Our body NEEDS need cholesterol. Lowering cholesterol, lowers our sex hormones and more, why would we need to do that ? Lowering cholesterol brings on illnesses like prostate and breast cancer etc., We have been told porkies over Statins.

Big pharma makes a fortune with their dangerous statins.

Heart Doctors are now reporting (from their large studys) that patients with higher cholesterol are having less heart disease than those with low or normal cholesterol. Our Doctor prescribed Statins, asprin and angina spray for my Husband's supposed Angina he never actually had. (thankfully he did not get the prescriptions) How dangerous is that ? Please do some homework on statins BEi, Doctor Mercola (American) is another Doctor against statins as are many other Doctors.

:) Not my words of wisdom, ButterflyEi, :) :) it is what I have learned from others I know who have been through these awful illnesses involving statins. The Altzheimers lady, a friends Mum, diagnosed two years with Altzheimers came off her statin drugs and within days recovered her short term memory as did two close relatives with dementia like symptoms. Sadly too late for the 3 heart attack family/friends and stroke lady. Sorry for rattling on BEi. but far too many are being pushed onto statins and they need to realize Statins are actually causing so many problems.

1 like
Reply

Wow! Will do some reading thank you

1 like
Reply

For every type of prescription medication there is a natural alternative out there for every ill. A natural alternative for a statin, I would be looking at Niacin. Niacin (vitamin B3,) normalizes cholesterol levels. It also balances thyroid hormones and helps blood pressure too. I take niacin as it gives me a bit of a lift. It helps anxiety and depression too and more.

Google 'Doctor Hoffer and Niacin,' amazing stuff what he did. Also not many probably know, but Doctors years ago (before thyroid bloods were about,) knew that if you had high cholesterol you actually had a low thyroid. Low Thyroid (Hypothyroidism) and high cholesterol have an inverse effect on each other. Treat the low thyroid with thyroid medication, and the high cholesterol blood levels come down and the low thyroid is normalized.

1 like
Reply

Hello butterflyE1. The way I see it is that you've been suffering pain and discomfort for quite awhile now so it's great that you've found something that works for you so tell your doctor that now you've found relief at last you would like to enjoy it a bit longer. When and if it stops working then you'll think about trying mind over matter but let you enjoy being pain free as you've struggled for long enough. All GPS have been told to prescribe less medication as a lot of meds don't work very well or leave nasty side effects and even damage if your on them long term as in years. But you've only just started taking yours so should be fine for a while yet.

1 like
Reply

great words lowlife I do not think I am proactive with the GP and on that I must improve. Thank you.

Reply

Gabapentin should never just be stopped taking..it should be weaned off.. Think you need to issue a complaint as you have not been tret right.

1 like
Reply

You may also like...