neuropathy

[Dibbydog]

Hi. In October 2021 I stepped out of bed and realised my left foot was feeling a bit numb. Some months later I was experiencing the same lack of feeling in my right foot and going up the calves of both legs. Now my left foot goes numb frequently in the winter and I am starting to feel pain in both thighs. Also my hands get very cold. I eventually saw a neurologist who did various blood tests and I had an mri scan of my spine. Nothing was found. I then was referred to a vascular consultant. Unfortunately I saw a locum doctor who quickly looked at my feet and said the blood was flowing fine and that was it. He just said he didn’t know what was causing my numbness. My symptoms seem to be getting worse and I would like to know what is causing them. I saw a doctor just before Christmas who said he was stumped and didn’t know what was causing my symptoms and prescribed Duloxetine but I haven’t taken them. I am considering going to see a doctor privately but do not know who to see.

[honeybug]

Hi Dibbydog 🤗🌿🌸🦋

I’m 73. Low thyroid can cause coldness -mine caused chilled to my core coldness. That affected my circulation because I have autoimmune disease Raynaud’s Phenomenon. Numbness can be caused by neck issues. I have scoliosis and eEDS so my extra loose joints due to MTCD mixed connective tissue disorder/disease causing easy whiplash and dislocations that pinch nerves and cause migraines numbness and pain.

There are so many issues from the neck.

I just received word at Christmas that my 9 yo third cousin had a brain tumor that put pressure on areas of the brain causing numbness inability to feel or function her legs. Successful tumor removal restored her legs and saved her life.

Have you had complete blood work lab testing done? Nerve conduction testing? Cholesterol and thyroid plus B12 testing. All above can cause many symptoms if out of proper ranges.

I hope you get this sorted soon sweetie. I have spine damage that causes numbness and painful itching.

So much to deal with and I feel such empathy for you.

Love and prayers,

EJ 🤗❤️🥰🙏🕊️🌿🌸🦋😇

[Dibbydog in reply to honeybug]

Thank you for your message. As you say numbness can be caused by so many things. I do have an underactive thyroid and have been taking thyroxin for a long time. I am going to have a blood test to check that in a weeks time. Also having my iron levels checked as that was very low. Am now taking iron tablets. It is a battle getting the doctors to do anything!

[Caradoc1a in reply to Dibbydog]

I would definitely get B12 status checked. Compare your results to NICE guidelines. Look up B12 deficiency symptoms NHS website. It may be useful. When I did that, the jigsaw pieces came together!!

[Dibbydog in reply to Caradoc1a]

Thank you. I am taking B12 daily as I am taking a bio-iron complex tablet from Lamberts which includes B12 (not sure why). Will look at NHS website as you suggest.

[bookish in reply to Dibbydog]

Hi, I am afraid that it is likely that taking some B12 orally has put your serum level up enough so that your blood test looked ok. As you have an underactive thyroid (presumably autoimmune) it is likely that you are B12 deficient or have pernicious anaemia. We are unable to measure B12 in cells, and B12 in serum has many stages to go through, so having 'enough' in blood does not mean that you are not deficient in cells. Autoimmune thyroid generally affects gastric parietal cell function, - these produce intrinsic factor (needed for B12 absorption) and stomach acid production (needed for iron, B12 and digestion generally). You may well need B12 injections - oral/sublingual does not reliably work for everyone and is not worth the risk especially as you already have neurological symptoms.

[honeybug in reply to Dibbydog]

Oh I’m so sorry to hear that you’ve struggled with getting a proper diagnosis. I did to with one took 64 years. I pray you get the help you so desperately need. Battling the medical system is very hard especially as we get sicker and older.

Lasting gentle hugs and prayers.

EJ 🤗❤️🥰🙏🕊️

[Dibbydog in reply to honeybug]

Oh thank you for your nice email.

[honeybug in reply to Dibbydog]

🤗🥰🙏

[Jasper79]

Did your neurologist not request a nerve conductance test?

This should be definitive for sensory neuropathy.

I have been down the vascular, spinal route before getting a diagnosis of axonal large fibre peripheral neuropathy.

It took considerable perseverance and 5 years.

I wish you luck.

[Dibbydog in reply to Jasper79]

I am not sure if I had that or not - it was a few years ago that I saw the neurologist. I will have a look in my file and see if I can find out. I am sorry to hear that you have that. I wish you well.