private consultation

[orange33]

I have peripheral neuropathy and RA. I wonder if anybody with this condition the peripheral I mean has decided to consult a private neurologist. As this is in my mind at the moment .

[RoadRunner44]

Hello, II was really interested to learn you too have been diagnosed with peripheral neuropathy. I have neuropathy of the knee. Doctor prescribed amatriptilyn to help with painand sleep. I still have a burning pain and and stffness. He doesn't seem really interested in helping work out a plan to help me long term. I'd be interested in your feedback after seeing a neurologist as the pain certainly interferes with my daily life.

[bookish in reply to RoadRunner44]

Hi, I notice you were talking about taking a PPI some time ago. Are you still? As you were taking this for some years, you are likely to have a vit B12 deficiency - the PPI reduces stomach acid which you need to 'cleave' the B12 from your food, a process which gets harder as we age, because stomach acidity reduces anyway as our gastric parietal cells become less efficient (that is why you get gastric symptoms - actually due to insufficient acid, not too much, in most cases). If not supplementing B12 or folate/folic or a B complex, I'd suggest getting serum B12 and serum folate tested first. There are other tests that may need doing and unfortunately there is no test which can rule out the possibility of deficiency - lots of tests which may help to show that you are deficient but none which say that you can't be. And diet changes to help keep blood sugar under control, as any sugar issue will make the neuropathy pain worse, even if not diabetic or pre-diabetic. Magnesium spray on the painful knee could help reduce the pain, help you sleep, and magnesium is vital for many enzyme reactions in the body. Vitamin D deficiency could also be contributory, so best tested. Best wishes

[RoadRunner44 in reply to bookish]

I appreciate you replying to me with some very useful information. I am having a face to face appointment with my surgery pharmacist later this week and will broach the subject of my taking long term Omaprozole and being tested for B12.Sounds possible there is a deficiency. He might refer me back to a doctor but it certainly is important to go armed with some knowledge to be able to speak with confidence. Thnk you so much.

[bookish in reply to RoadRunner44]

My pleasure, good luck with the appointment. Once you have test results, write again or have a look at the HU Pernicious Anaemia forum with any questions. It isn't an easy thing to get diagnosed or treated, but is needed by every cell in the body, so it is vital that these complex processes are working well. Do not accept oral/sublingual treatment as there is no guarantee that it is effective (it can raise serum level but without resolving the cellular deficiency - as I found to my cost!). You will need injections. (And you need to start B12 a little before adding folate, never the other way round). Cheers

[bookish]

Hi, it may be useful, but if the private consultant is also conventionally trained you may not get any further than you have already. Can I ask if you have had recent blood tests, if you always get copies of your results, and if you take any supplements? As you already have an autoimmune condition (RA) it may well be that you have something like Pernicious Anaemia (autoimmune form of vitamin B12 deficiency) or a straight B12 and/or folate deficiency, and there are medications (and surgery, and diet etc) that can make that more likely. Are you taking a PPI (like Omeprazole) or Methotrexate - and if the latter, are you getting folic acid or folinic acid or methylfolate? Anyone with a neuropathy needs to look hard at blood sugar regulation and B vitamins, these being not at all easy to rule out as causatory or contributory, especially as we get older (ease of B vitamin absorption reduces once over 50!). Best wishes

[orange33 in reply to bookish]

Hi

Thank you for your very kind reply. I do take methotrexate and the folic acid plus Vitamin d .

The reason I’m considering a second opinion is because my condition has become a lot worse. I asked my GP for referral or second opinion from the clinic that I assumed I was still a patient.

I found out that I was no longer a patient of the neurology clinic and I hadn’t been informed at all I also understood there was a letter from this particular Doctor Who had seen me that it was due to my anxiety!!! my GP also couldn’t understand that.

I have had this condition for 10 years now and I realise not going to get any better .

I got a phone call telling me there was a 30 week which I was prepared to do. the 30 week wait I phoned the clinic again and found out it was now a 46 week wait. I couldn’t understand that. I was warned by my GP there is a long waiting list and I understand that.

Due to this condition I can no longer write my name. I have to have a mug to drink from. Cannot hold things for very long as the hands has got worse.And of course I can’t walk on aided, et cetera.

I apologise for this rather long post. But maybe other people reading this may have other ideas.About this condition.

[bookish in reply to orange33]

Hi, no need to apologise, you have a lot going on and it can be hard to unpick what is causing/contributing to what. A second opinion is a good idea. I found in my own case that getting all the basics as good as possible helped enormously and doctors generally don't think in terms of diet or essential nutrients. I tested privately, did a lot of reading, used an anti-inflammatory autoimmune type diet and tried lots of calming stuff like breathwork, meditation etc. My anxiety was definitely a lack of nutrients thing - can be due to low vit D (so worth retesting, which you can do at home fairly easily), or magnesium, vit B12, folate (folic might not be suiting you and you might be better with a small dose of methylfolate instead for example), or a thyroid issue (often missed or mis-treated) or lots of other things. There are always bits that you can tweak to help your body heal as far as it can and function in the best way possible. Hopefully you have been tested for Coeliac but testing is far from conclusive and you can have a different gluten-related condition anyway. Going GF made a vast difference for me, I was lucky. Best wishes

[Jasper79]

Yes. I did manage to see a neurologist privately but I was very lucky. I had booked one but that appointment, already about 3 months ahead, was then postponed for a few more months. I then tried another private hospital which listed a neurologist and was offered the chance to go on a list for a cancellation which came up at a days notice a few weeks later. ( I found out later that the lady normally worked in Harley Street and only did one day a month locally because she lived nearby.)

The neurologist was brilliant beyond measure and pleaded with an eminent peripheral neuropathy specialist she knew to see me in the NHS which took a few months but was again excellent.

Meanwhile 16 months after an earlier referral on the NHS for a neurologist elsewhere, I was asked if I still wanted the referral - no actual appointment ever given.

In my experience then it is difficult and requires perseverance and luck.

I hope you get a bit of luck too.