Unexplained neuropathy and other symptoms

Hi There

I have been experiencing a baffling range of symptoms since April this year, for which the doctor can find no answers. Symptoms include:

- numbness in fingers on waking, particularly when elbow has been bent

- Occasional and random numbness in toes

- 'Buzzing' in the ball of my left foot on most days but can also happen in other limbs

- Abnormal liver enzymes

- Acid reflux/gerd

- Memory/Cognitive issues

- General feelings of unwellness at times, particularly after very small amounts of alcohol

- Joint pain, mostly in feet, hips and shoulders

I have had lots of blood tests including Lyme and Rheumatoid Arthritis, liver scan, nerve conduction study/EMG, all perfectly normal except for intermittent abnormal liver enzymes.. just this week my GP has said that it could all be psychosomatic and I have read about functional nerve disorder which seems to cover most of my complaints. However, i met a lovely lady the other day who has Lyme disease (diagnosed privately after negative results on NHS) and RA and her symptoms are uncannily similar to mine!

I guess what I am asking is, is there anyone out there who has had similar symptoms, particularly the neuropathy, liver enzymes and acid reflux, which relates to a particular syndrome? In essence, should I be asking my GP to keep looking? I am having my B12 and coeliac bloodtests next week but beyond that, no other testing planned.

Thanks x

13 Replies

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  • I have neuropathy with no found cause. I've had all the blood tests, scans etc. and am grateful that the specialist I've been seeing has not doubted for a moment that my symptoms are real. It must be very frustrating to have a GP suggesting it is psychosomatic. I can't offer any advice, only sympathy, and I hope you get somewhere with finding a cause and some treatment.

  • Thanks so much for lovely reply! I have not yet been referred to a neurologist/specialist, so I think that is probably what I am going to ask for, as I am sure they see this situation much more regularly than the GP. I hope your own symptoms are improving and I send you my best wishes for the future.

  • I understand what you are going through cause I have now for about 3 years and just found out it is from a low b-12 which I am not totally convinced. And I am not going to repeat test I already did and for sure not an ankle biopisy and stay in pain. Neuropathy is not curable and they just throw drug after drug at you. Some people had it from chemo but it gone away. Sorry I can’t be anymore of help

  • Hi There, so sorry for the delay in replying and thanks so much for your thoughts. I am really sorry to hear that you are suffering too. I hope to get the results of my B12 this week and get a referral to a neurologist. I think you are right in that, whatever it is, it's unlikely to go away and I will need to learn how to manage it. I am trying to look at changes in my diet and do more exercise but I think I would feel more confident about moving forward with some kind of diagnosis. Thanks again and take care.

  • Hi,

    Firstly, I'm sorry to hear about your symptoms but I can relate to many of them. I have noticed an intensity to mine which have been really progressive now for the last in particular 2 years. In these areas a GP can only go so far, and in my case I have sought the advise of a neurologist. Diagnosis - peripheral neuropathy. A broad diagnosis but comforting that to date my neurologist has kept me condition separate from the really nasty neurological conditions out there and essentially that is where i have my comfort from. Provided your latest results come back normal, I suggest making an appointment with a neurologist who will quickly identify with the symptoms and based on your history come up with a diagnosis.

    Please keep in touch and let me know how you progress - it is good to share experiences on these type of forums

    R

  • Hi R, thanks so much for your great advice. I am so sorry to hear that you are suffering too and I am sure it's very worrying to see things getting progressively worse. I do understand how important it is to get some clarity on what's going on and I agree that this is likely to only come from a specialist. I will see my doctor again in a couple of weeks and ask for a referral and will definitely keep you posted.

    Take care of yourself. S

  • With some of your symptoms I am thinking Low Thyroid - have you been tested and perhaps you have some results you can share. If you have low thyroid then also key vitamins and minerals will be low - B12 - Folate - Ferritin - VitD ...

    b12deficiency.info/signs-an...

    thyroiduk.org

  • Hi Marz, sincere apologies for the delay in getting back to you and thanks so much for your response. Thyroid seems to be normal on bloods but I am still waiting on the results of the B12 test. My doctor was quite adamant from my bloodwork that I wouldn't have a vitamin deficiency but from what I have read, different countries have different thresholds for what are considered normal levels. My Aunty lost 3 babies some years ago due to a vitamin B12 deficiency so I know it's in the family. If B12 is low, I will push to get the other vitamins an minerals tested too and let you know how that goes. Thanks again Marz for your thoughts and take care.

  • Have you seen those so called *normal* thyroid results ? These are the tests that are needed - TSH - FT4 - FT3 and Thyroid anti - bodies TPO & Tg. GP's rarely test more than the TSH and occasionally the FT4 - which only gives you part of the story.

    I gave you the link to Thyroid UK so you can read up on it all. I have been on the Thyroid UK forum here on HU for six years so have learnt loads. Click onto my name above - as well as reading about my journey you can also read my posts and replies 😊

    Normal is an opinion and not a result !!

    Low thyroid goes hand in hand with LOW B12 - Folate - Ferritin - VitD so all need checking. Raised liver enzymes and GERD are also Hypo symptoms. PPI 's will inhibit the uptake of B12 - so not a good idea ....

  • Hello Suki8, I have many of the same feelings and symptoms as you. I have a rare liver disease called Wilson’s Disease and it can go undetected and/or be misdiagnosed very easily especially when you have been diagnosed with other diseases that share similar and/or the same symptoms. I was diagnosed with a few thyroid diseases as well that also have the same/similar symptoms. I have Grave’s disease, Addison’s disease and had Thyroid cancer and cancerous thyroid nodules. I have severe peripheral neuropathy in my feet, legs, hands and arms. I have stomach ulcers, gerd, acid reflux and ulcerative colitis. Maybe you can research some of the diseases that I have, that you haven’t already been tested for and if you have the same symptoms, you can ask your doctors to test you for them. It’s just an idea because I understand how frustrating it is when your doctors are unable to correctly diagnose and treat you. I’m unsure if all of my rambling has helped you in any way, lol, but I wish you the very best of luck!

  • Hi Chaserwaser, Wow I am so sorry to hear about all the illnesses you are struggling with. All, that must be so difficult for you to deal with on a day-to-day basis. :-( Wilson's Disease seems to fit with quite a few of my symptoms and funnily enough, it's the liver enzyme issue that seems the most odd. I think GP's tend to look at everything in isolation, without connecting symptoms, which can be so frustrating. Before they sent me for a liver scan, they found that I had a raised smooth muscle antibody, as well as raised enzymes which I think points to hepatitis but as my scan and hep blood results were normal, they have disregarded this. They have tested my thyroid 3 times now and I am told that it's normal. I feel that I do have some form of GERD but I don't get any heartburn at all with it, just sore throat, acid taste but at times my throat/mouth is also very dry so it could be something like Sjogren's syndrome I guess? All that said, I had no acid problems at all before they put me on Omeprazole in March to counter the effects of Naproxen!!! Peripheral neuropathy has been mentioned to me by a few people on here so I am definitely going to push for more investigation into this.

    Thanks so much for all your kind advice Chaserwaser and you didn't come across as rambling at all. :-)) Take Care.

  • Hi Suki8. Has your Dr tried a skin biopsy of the left, outside part of the ankle? My GP has never even heard of it and wouldn’t support persuing any other options. I was left with no answers and severe widespread numbness with intense pins and needles in both feet, legs, hands, arms, shoulders, hips and lower back. It presented itself with like symptoms to Lyme disease, but wasn’t. They did a blood test to determine that. I went to a neurologist on my own without my GP’s recommendation, since my GP was of no assistance. It turns out I have a moderate to severe case of small fiber neuropathy. My GP admitted that he had never even heard of it. General neuropathy affects the large nerve going from the brain and throughout the entire body. The main nerve starts to die. Small fiber neuropathy affects the small nerves going from the large nerve to all of the other tissues in the body. The small fibers begin to die. There have been other issues that have come from this diagnosis since then. If you’re not already, I would definitely suggest going to see a neurologist and have them look into small fiber neuropathy. Have them do the tissue biopsy from the outside of the left ankle so they can do a count of the small fibers. This could determine whether or not you have it and how severe it is. Good luck Suki8.

  • Thank you so much for such a detailed and helpful response Joannemlf x It must have been awful and very frustrating for you to have a GP that wasn't working with you to get to the bottom of your symptoms. I hadn't heard of small fiber neuropathy, although I think we may call it peripheral neuropathy? Even so, a skin biopsy has not been mentioned. I am visiting my GP this week and will ask about this. I will also ask for a referral to a neurologist, as I don't believe I am going to get a proper diagnosis any other way. There are also a couple of my symptoms which don't seem to fit in with the others, so it wouldn't surprise me at all if I have more than one underlying condition. Thanks again for sharing your experience. I will let you know how I get on. Take care of yourself Joannemlf x

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