HELP WANTED PLEASE!

[Bakbre]

Hi everyone

I need some advice. For about 18 months I have had a numb toe on my left foot and pain after walking for about 10 minutes on the ball of my foot. This has now spread to another 3 toes which are completely numb and 2 toes have started going numb on my right foot. Added to this I am now getting tingling/burning pain on my thighs, especially my left one. My consultant sent me for a nerve test which apparently showed no evidence of primary demyelinating polyneuropathy and she then sent me to the Orthotics Dept who made me some boots which have not helped at all. It is getting a lot worse and the Consultant seems now to dismiss it and doesn't appear to be really interested.

After asking my chiropodist if he could suggest anything, he said really that was not something he could help me with and I needed to see a specialist.

I am at a complete loss what to do so I am hoping that someone on this forum can help - please!

[whisperit]

What a strange reaction from your consultant! What explanation does she offer (if any)? My toes are usually numb or aching, due to Raynaud's, and my thighs have

weakness and altered sensation due to myositis, but presumably neither

would apply for you? If you aren't seeing your consultant regularly, why not see what your GP has to offer - if nothing else, they should be willing to request further investigations or referrals on their own behalf? x

[Bakbre in reply to whisperit]

Thanks for taking the time to reply. When I asked my consultant what she thought it could be she said probably some kind of nerve pain, but I had already been tested by the Doctor in the Neurothapy Department and nothing had been found. There was nothing she could prescribe which would work but "I could try taking Vitamin B Complex which might help".

I have Undifferentiated Connective Tissue Disease and Rheumatoid Arthritis but I don't believe I have Raynauds. I am not sure what Myositis is. I had my first Rituximab infusions in December and it seems to have worked with all my other symptoms (touch wood!) and I feel well for the first time in a long time. But this problem has now got much worse and it is really getting me down. That and the fact that the burning/tingling sensations in my legs are really painful.

As you say I think I may have to resort to seeing my GP and ask for his help.

Once again thanks a lot

[Hidden in reply to Bakbre]

Could it be Small Fibre Neuropathy (SFN) perhaps?

This horrid condition usually doesn’t show up in nerve conduction studies and specialists in the UK are often disinterested in it - mainly because they can’t do much to treat it. It can be ideopathic or it can be caused by an underlying condition such as diabetes, alcoholism, medications such as chemo and anti tnfs (I don’t think Rituximab would usually cause it though), Sjögren’s, Vasculitis, Lupus, Sarcodosis or RA. Even Parkinson’s and MS.

Of the rheumatic diseases it’s most often associated with Sjögren’s affecting up to 50%. I was initially diagnosed with RA but this was changed to primary Sjögren’s due to the non length dependent (ie everywhere affected) SFN.

[Bakbre in reply to Hidden]

Thanks for replying. I am going to see my GP this week and I will asking him to refer me to a nerve specialist and get some tests done other than the initial ones that didn't find anything. Apparently that it very good at detecting Large Nerve Neuropathy but not the SFN and there are other tests that can be done Wish me luck!

[MsAndyIvy]

I have this and have been referred for small nerve testing (thermal testing) after having the initial nerve tests which didn’t show anything.

[Bakbre in reply to MsAndyIvy]

Thanks for replying. To have to put up with this on top of everything else is just really rotten for me, you and everyone else who has this horrible condition.

I have come to the conclusion that if there is such a thing as life after death, I must have been a serial killer in my last incarnations!

Sorry I sound miserable but this is really getting me down at the moment. I will hopefully feel better once something is decided and I know what I am dealing with.

I hope you are feeling better at the moment.