Log in
Foggy's "Invisible Illness" Support
3,583 members467 posts

Peripheral neuropathy consultant recommendations

Hi all

I have recently been diagnosed with non diabetic peripheral neuropathy affecting both sensory and motor nerves. Currently symptoms are annoying rather than painful and debilitating, but I am fearful of what is to come. Symptoms probably first started a year ago and it has been around a 7 or 8 month process to get through blood, CT scan and nerve conduction tests. No cause has been identified and my condition has extended from toes to hamstrings in that time.

I am concerned about the time this is all taking while potentially irreversible damage is being done. I have not given up on finding a cause and some treatment to slow or halt it's progress, but I suspect my consultant has. I am not scheduled to see him again until late Jan 2019.

I would be interested to hear of others experience with the diagnosis process - is mine typical?. Also I would like to know who the peripheral neuropathy experts are in the UK as I am thinking of paying for a private consultation.

Thanks for reading

20 Replies
oldestnewest

I can't help with finding a private neurologist. The one I go to on the NHS seems very thorough and has been through all the tests and scans for me, alas without finding a cause. I take supplements (ALA, B12, Magnesium, Fish oil and Evening Primrose oil - from research on the internet), but don't want to go on to pregablin or gabapentin. As you say, there seems to be no other advice. If you do find anything that helps, please post back here. The other things that I find help are a small Tens machine which shuts off the feeling in my toes for a while, and a cooling gel pad for my feet in bed in the summer.

Best wishes, Deborah

Reply

Hello. Thank you so much for replying. I have been thinking about supplements so your information is very useful.

1 like
Reply

Hi there, I don't usually write on here, but I see you only have one reply, so maybe what I have to say may help you a little..

I was diagnosed with non diabetic Sensory Axonal Peripheral Neuropathy two years ago.

It started for me with numb toes and slowly worked up to my knees and from my elbows down to my fingertips .. I too live in the UK, so it took eighteen months on the NHS to get my final diagnosis.

It now feels as if I am permanently wearing socks and gloves.

I got nerve pain which is a burning feeling in my feet and legs, and sometimes about once a month I got what I call 'an Attack' this is awful my whole body aches and feels stiff during the day and at night I wake up curled up into a ball with my body feeling rigid , I also 'feel' a kind of buzzing running through my body, night time is worse.

I tried pregablin and gabapentin (only one tablet of each at different times) and they both made me feel quite ill. I have since heard that they are habit forming.

I did a lot of online research in relation to my illness and I came up with the following:

I take one vitamin B12 per day (the jarrow formula) this is pure an doesn't leave any residue in the kidneys I also take folate too.

Also Benfotiamine 150 +Alpha-lipoic Acid 300 (all in one capsule) this is the vitamin that has made all the difference in the world for me .. look it up online.

And finally an Omega 3 capsule.

The vitamins I have mentioned are all taken for nerve health.

I wish I could have known this at the beginning, I might have fared better .. but I didn't know.

I found that it took about three weeks before I saw any improvement in my symptoms.

The burning sensation has mostly gone ....sometimes it is gone for weeks and sometimes it burns a little, but I can still have the 'attacks' but about once every eight weeks now.

My doctor (who is amazing) gave me a repeat prescription for just seven 5mg Valium every eight weeks and these sort out my 'attacks.

I think if you go privately to see a Neurologist you will not get better treatment but you will find your answers more quickly. Spire have excellent Specialists you could start there by looking online.

It seems to me that your disease seems to be slow moving? Which is a good sign, for me ... I went from numb toes to where I am now in just about a year, and felt panicked at the time because the nhs was so slow in getting me seen by someone who could help me.

They never found a cause for my ailment but I seem to have it under control, I also ride an exercise bike every day to keep my legs working okay.

I hope what I have written helps you in some way Alan45 and good luck x

1 like
Reply

Hello heatherthomas

Thank you so much for the taking the time to reply. I think you are right that I won't get better treatment privately but it is the slow pace that concerns me with a progressive condition. The information on supplements is interesting as well, certainly something worth trying. I too am very reluctant to take prescription drugs.

Given other symptoms I have had over the years (e.g joint pain), I am getting interested in auto immune responses and chronic inflammation. I have seen some references to linkages between gluten and peripheral neuropathy, so in the absence of any other help from the nhs I have just given up gluten. Although I thought my diet was pretty good before, I am also upping my fibre and generally trying to follow anti inflammatory diet principles. Only day 3 so too early to tell yet and i got off to a bad start as i forgot beer contains gluten on day 1!!

Thanks again for responding. I am glad that you are able to manage your condition.

1 like
Reply

Dear alan45 just for information peripheral neuropathy is one of the lesser known symptoms of ceoliac disease, which is what I have as well as peripheral neuropathy of the face. You can have a simple blood test for ceoliac called the tissue transglutaminase test. Generally you have to be consuming gluten for the test to be positive although many ceoliacs remain positive months after going gluten free. It might be worth a try as it will either confirm or rule out a major cause. If the blood test is positive the gold standard test to confirm the diagnosis is a gastroscopy of the small bowel. Ceoliac is confirmed if you have atrophy of the villi in the small bowel. This might come as a surprise but many ceoliacs have no gastrointestinal symptoms at all but present with neurological symptoms such as peripheral neuropathy.

1 like
Reply

Hello and thanks so much for your reply. I had a recent consultation with my GP and I had mentioned gluten intolerance as a potential cause. He sent me for more blood tests which were all normal. I don't know if he specifically tested gluten intolerance. I will check. In the absence of any suggestions from the medical profession I decided to try gluten free. About 3 weeks now. Sometimes I like to imagine it's making a difference but my symptoms are up and down.

I will persevere for a few months. Generally I am very interested in diet as a "treatment". I listened to a food program on the radio recently and was astonished that a 6th year medical student had a total of 3 hours of lectures on nutrition so I am not sure traditional medicine is going to be much use. I am thinking of seeking out a functional medicine practitioner or naturopath.

Thanks again for your reply

1 like
Reply

Best of luck with your gluten free diet. In case you weren't aware, you have to eliminate all products with wheat, barley and rye. They can turn up in sauces so always worth checking the labels. Hope you get some improvement.

1 like
Reply

Thanks. I have made a couple of surprising slip ups along the way. What is most upsetting is that I enjoy the occasional real ale beer! Have tried a couple of gluten free brews that aren't actually that bad though, just need to get my local to stock them.

1 like
Reply

Keep us posted how you get on with diet changes. I've had the coeliac test but it came back normal. I heard that program as well, western medicine is so focused on drugs and other treatments but almost completely ignores diet, which is crazy as it obviously has such an effect on our well-being. I've got the Kitchen Doctor book (Rupy Aujla, the author, was on that program) and it is very informative about nutrition and has good recipes.

1 like
Reply

Thanks for the book recommendation. I'll have a look at that.

Reply

Dear ALAN

I strongly recommend you request your GP gives you prescription for Fluoxetine. It really does release you from the feeling feet and hands been in freezer. I found Gabapentin, Amitriotylene etc. All made me foggy all day without much sleep. I could kiss my rheumatologist feet for instructing my GP. Idiopathic means “cause not known” so keep experimenting & thank technology for health sites such as these.

A Warner, more active new year

1 like
Reply

Hi Alan...I also have peripheral neuropathy in my feet.....I am told it is a B12 deficiency, and causes nerve damage. It has slowly progressed to worse, and is now also in my hands. they are miserable, so sore, and burn from inflammation, numbness, and stiffness in the mornings. My Dr. told me to just soak in Epsom Salts and switch back and forth from warm to cold water....also take Ibuprofen. It really has not helped much, and I need to watch what I eat too, as some foods affect the pain.....sugar, caffeine, salt, and spices... I also was taking B12 shots every month, but Dr. stopped those, and now I take a sublingual vitamin B12 each morning.

1 like
Reply

hello i have had the tingeling in my hands for 3 weeks my legs feel like ime carying weights on them i find it dificult to pick things up like a pen i am having problems with coordination and thoughts i also have perifual neuropathy and fibromyalgia and many other symptoms i have been asked to have a blood test but i have a needle phobia .thanks sheila.

1 like
Reply

I was also diagnosed with ideopathic, chronic, non-diabetic peripheral neuropathy about 4 years ago and was put on gabapentin by my neurologist. I am taking 2600mgs/day now and gaba has been very helpful in enabling me to get my daily tasks done as long as I take a 1 hour rest in the mid afternoon. Symptoms are prickly, achy feet (nerve pain) and some prickliness in the skull. As of last week have started a withdrawal from gaba by taking 100mgs less every week. I don't like taking any pills and don't like what gaba might be doing to the brain's structure so I have some insentive. Doing this needs your doctor's awareness. If 1 week is too quick, I can switch to 2 weeks. The key is a slow withdrawal. I now know what my nerve pain tolerance is and that it is a false pain that the brain is reading. Hopefully I'll be able to cope with the change that will have to happen in the brain while weaning off the gaba and onto my normal function.

1 like
Reply

hi there,

im conducting research for my final year of uni regarding keeping active with reduced dexterity and hand strength, if anyone is able to complete my short 3 min survey about your condition it would really be of huge help.

surveymonkey.co.uk/r/QHMSV7N

thanks for your help

Reply

SPAM

Reply

I am new here, but PN is old hat to me. Had it 10 years now, and mine moves slower then yours. I hear that everyone is a little different. Been through all the trial and tribulations of this disease and lots of Doctors. Sadly there is no cure, but you will find that certain things can help improve your condition and more importantly your daily outlook. To me, comfortable shows (think loose and with lots of padding) are a must. I mentioned in one other post, but trying to get the word out to folks, the only hope I see for all types of PN sufferers rests in a small company in California, it is called WinSanTor. They are working on the cure, but this is a long, complex journey. I have no affiliation with them, but want to get the word out about hope for this awful disease. Check them out and keep an eye on them. What they have in the works is the most exciting thing for us that I have seen in the 10 years I have been living with PN. My best to you!

1 like
Reply

Wow, thanks for posting this!

1 like
Reply

Alan - did you ask your GP to prewscribe Fluoxetine (the old Prozac - don't be alarmed it does not enhance my activity). If you are taking blood pressure pills check these too as Candarsartan was causing the stabbing pains in my legs at night. viagra maybe useful too. tell us how you get on

Reply

Has anyone tried the recently legal cannabis oil for your nueropathy? If so, how did it work for you?

Reply

You may also like...