sensory neuropathy

[Molly108]

I’ve just been diagnosed with sensory neuropathy and had bloods taken to be sure nothing is causing it, I am not diabetic. I thought it was due to my Covid infection as pins n needles in my feet were one of my early symptoms that have got worse over the last 4 years but the neurologist said no, it’s nothing to do with covid.

a little puzzled to what triggered it especially as he said I would think your bloods will all come back normal.

[bookish]

Hi, unfortunately regular blood tests alone cannot determine lack of cause, if that makes sense. There are many tests which can help to determine a cause. And it may well have been covid triggered. Covid can mess with blood sugar levels and you don't need to be diabetic for sugar to affect neuropathy. Covid can also (like other viruses) affect thyroid functioning, and that too could cause neuropathy (TSH test alone is not enough, you'd need FT3 and FT4 plus two lots of antibodies - and you can do this privately from a fingerprick test as GP won't as a rule). Previous surgery and anaesthesia if any, and other medications, and diet (meat avoiding?), and family history (autoimmunity, B12, thyroid?) are also relevant, as I would think the most likely and most likely to be overlooked is vitamin B12 (although neuropathy can also be caused by lack of other B vits). Please *do not take* oral B vitamins until you find cause (if you are already, then that will have skewed the results and will make diagnosis much harder to get). Covid affects the way that we need and use B12 and some other Bs via one-carbon metabolism and many people who were borderline low (in cells, not in blood) have become diagnosably deficient since then. Many doctors mistakenly believe that B12 being adequate in serum means that it is adequate in cells and that you cannot be deficient. This is untrue. There are a number of processes that B12 has to go through to get from blood to cells and any of them may not be working well for you (as for me!). It is complicated - perhaps when you have a copy of your actual results come back and post them (with no personal details of course) or put them on the HU Pernicious Anaemia forum. You can be cellularly (or functionally) deficient at any serum level. The full blood count can give you useful pointers. I have seen a lot of really good neurologists but have yet to meet one who has enough interest to really understand B12. Cheers

[Molly108 in reply to bookish]

Thank you for this. My B12 was looked at and I did try injections through gp but only had 9 injections with little effect and also not sure my gp understood the connection of long Covid and b12 He also talked about blood sugars so suggested I go on a low carb diet to see if it helps and to get my blood sugars lower as it was 36

I will definitely ask for the test results. He did say he was checking a lot of autoimmune syndromes and everything else that could explain it 🤷‍♀️ time will tell x

[bookish in reply to Molly108]

No problem. I assume you had 6 loading doses over two weeks and then a few - at what interval? 9 is really not very many, I've had 46 so far. If they had any effect, then you need them, so you need to document symptoms before and changes with injections - good or bad (healing takes time and it can get worse as things come back to life before getting better). Have a look at your folate result too. Best wishes

[orangecity41]

I have sensory neuropathy. Mine is Hereditary Motor Sensory . I was put on Gabapentin medicine. I also have peripheral neuropathy which say is caused by Kidney Disease. I also have low B 12.