Hello again everyone. Hope you’re all as well as you can be given whatever life is currently throwing at you :)).Strange question. Does anyone else get a buzzing rhythmic sensation in their feet? I first noticed it a few months ago but it only lasted minutes-feels like a vibrating alarm from a phone or sports watch-in my instep. Not painful but very noticeable. More recently it’s more frequent and last night went on for hours. I noticed this morning that the tip of my big toe is numb on that side. Could this be an early neuropathy?
My foot pulses feel fine. I’m waiting for a specialist appointment at Kellgren Centre Manchester in November to look at a possible EGPA diagnosis. I’ve also just heard my paranasal sinuses are full of polyps-does anyone think biopsy of them will help diagnosis?
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Hello, can only empathise because I have this too, left foot worse, I know I have a bulging disc. I get the buzzing and vibrations, I also get twitching in that same leg, same side as bulging disc. In my experience doctors and surgeons aren’t interested, never been sent for a nerve conduction test either so I’m going to ask for one.
I was once diagnosed with diabetes but think this was only due to having steroid injections in back and hip, it’s now back to normal!
Can you tell me what EGPA is please? My left foot has many areas of numbness, I feel due to the fact I had to wait a fortnight for what was deemed an emergency by the surgeon himself, no wonder they don’t want to do the nerve tests.
Good luck to you, would love to hear back from you if you find answers/get diagnosis.
I have something similar in both feet and my left hand, it’s as though I have dry sand under my feet and slight buzzing in feet and one hand. Also peculiar feeling that I am wearing short tight socks! I have MPA, another of the ANCA vaculidites. I had normal nerve conduction tests but am now due to see another specialist for neuro-immunology. I think a major problem for us patients is that we have very rare diseases and very often the doctors don’ t know the answers yet. I have a wonderful specialist and he is quite frank with me about this but I feel he will find an answer if at all possible. But of course it is very frustrating for us patients. Hang in there and keep searching.
Thanks both. Its hard not to worry when waiting for a diagnosis Krawlins- EGPA is eosinophilic granulomatosis with polyangiitis-a type of vasculitis.
I also get lancing pain through my toe like there’s a big splinter in the end of my shoe. Amms43 I have read that small fibre neuropathy cannot be seen on nerve studies (emg) but can be seen on a skin biopsy.
I am having a nerve conduction/emg next week and my neurologist said if they doesn’t give the answers then I will have to have a nerve biopsy to check for small fiber as well I just want to know what is going on best of luck to you all
I have EGPA. when diagnosed over 2 years ago I had had a great deal of nerve damage in my right hand (couldn’t hold a pen) and less on my right foot. No buzzing or pulsing but lots of cramps. My hand has improved greatly but big toe is still pretty numb. I also have polyps and I have lost my sense of smell. It came back when I was on high doses of prednisone. ENT specialist explained that prednisone shrinks polyps. Now on low dose and smell gone again. Not bothered about that as I can live without it. Specialist advised that surgery on polyps can be unsuccessful so I cope with nasal sprays and antihistamines. Do you have late onset of asthma , allergies and rhinitis? These symptoms usually exist before EGPA sets in.
Hi Cairney, thanks loads for answering. I’m sorry to hear your diagnosis but pleased to hear the nerve trouble recovered a bit. It’s amazing to find real people with EGPA on here and not just case studies in papers. My asthma got worse a few years ago and I developed recurring eosinophillic pneumonia (high eos and infiltrates on CTs chest X-ray, with night sweats, weight loss, fever).Then allergic-sneezy, snotty, itchy reactions to lots of things including alcohol, sulphites in food. Over past two years sinus symptoms have escalated, always sneezing, runny nose, face pain, blocked nose, bleeding on off. CT shows lots of polyps/opacification and waiting ENT opinion. I’m on steroid drops, antihistamine etc. I’ve been increasing tired too. FeNo is often high, eos vary but were 5.8 this May. The funny sensory stuff is new. I have also got new joint pains in hands and feet. I also have ventricular ectopics about 10/h and bigeminy but my GP says she’s ‘happy’ with it...I have loads more somedays. I would like an echo for reassurance but don’t think it’s forthcoming. Anyway that’s my story so far. I’m probably just getting worried whilst waiting for my specialist appointment.
I have had this over many years and sometimes it feels as though I am connected to a vibrating machine. And yes, I get sharp stabbing pain too on my legs for no reason and over the years I have come to take all these symptoms as part of Vasculitis.
I have had nasty case of neuropathy on both feet and legs up to my knees. My doctors paid almost attention to any of these aspects. I give myself lots of massages (bowen, acupressure and aromatherapy oil) and they have helped much. And I think the symptoms are much less now. Human touch can be very healing and your own hands can do a lot.
The important thing is not to worry unless there is a clear reason to. Seek as much help as possible as a preventive measure but at the same time it is also very helpful not to worry and stay calm and positive. You will get better if you work towards it with patience.
I can empathise with the alcohol causing problems. I can honestly say that not drinking alcohol and drinking lots of water has made me feel so much better. I know giving up alcohol is not for everyone but it certainly helps me a great deal to consume moderately if at all. Hydration is really important to us people with sinus, rhinitis and polyp issues.
Hi again Cairney. Thanks for replying. It’s good to know there are people like you who can relate. Yes drinking plenty fluid always helps everything. Forgot to say I also have conductive deafness from middle ear granuloma, now I wonder if steroids would have helped at the time. Yes the the idea of making sinus pain and pressure worse is enough to put me off alcohol! And if it’s a party i don’t want to be sneezing everywhere and explaining I don’t have a cold. So I end up going through months without drinking alcohol quite happily. I try to do everything to be well including exercise, but I’ve had to give up running and core class because of joint pains, breathlessness and just generally being tired. I don’t want to have a vasculitis diagnosis but I do really want to know why I’m like this and it does seem like a lot of things fit. Roll on November!!
I had a vibrating sensation in my lower legs, and a sense of internal activity in my legs. It was only in the morning when I was just waking up. It was enough to be worrisome, but it did go away. It may have been earlier in the year before I felt the need to see a rheumatologist. Not a strange question.
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