Hi everyone I have gluten ataxia and am curious if peripheral neuropathy is limited to just autoimmune ataxias or do other types like hereditary and acquired ataxia sufferers have this also?
It feels like tingling, burning, itching, poor sense of feeling or pain even in my feet. They are also often red and have poor circulation, I think this is because of the damage to the nerve endings that can be irreparable.
How are others feet?
My feet..can often feel either very hot, or very cold…other extremities can be the same, and I’ve experienced ‘tingling’.
It’s likely this sensation is fairly common across the Ataxias, to various degrees. I’m diagnosed with Idiopathic Cerebellar Ataxia..and still being tested.
Hi wobblybeeJust happened to come across a photo of someone's feet who had peripheral neuropathy and they looked just like mine. Redness caused by inflammation and nerve damage. Despite having had nerve conduction tests, both negative, yet the doctors have not listened to me saying the reduced sensation and other symptoms are not anything to go by as the tests said otherwise.
Saw a really clued up locum neurologist who said the nerve tests would be negative as they don't pick up small fibre damage! Still researching this.
The important point is how we feel and what is happening to our bodies.
We do need to be more aware of putting our own health points across.
🙂Yes…I agree…we do need to be proactive..it’s rare for much information to be given at appointments..and not all ‘experts’ have the same opinion, which confuses us even more.
🤔 For years at review appointments..I haven’t mentioned the many irritating symptoms I experience linked to ataxia…I assumed the Neurologist would expect me to have them. I should have mentioned everything…particularly since I’m Idiopathic and any clue is likely to be helpful.
A few years ago I had an EMG/Nerve Conduction Testing..it was negative.
Hi I have ataxia of unknown type and cause. First thought it was ea1 but not anymore. I've had neuropathy pains numbness and tingling etc since early onset. I was sent for neuropathy tests with the needles (EMG) but this didn't show anything however the clinician said it only tests the main nerves and the smaller nerves can cause similar problems. So I now take gabapentin and this helps. I also swell up alot, my hands and feet, so I wear compression gloves and socks to help.
Hi aniholYour reply was interesting. Have you checked out Coeliac UK's website under neurological symptoms. There is quite a lot to read but may I suggest you read this carefully. Unfortunately there is still the old school neurologists treating us with ataxia that do not believe in autoimmune and gluten ataxia. This will cause inflammation and swelling. Research Professor Hadjivassiliou at Sheffield and draw your own conclusions.
One of the specialist ataxia nurses from the Sheffield clinic will be presenting at Ataxia UK's gluten ataxia support group next meeting which you might find interesting too. Check out the support groups page.
Good luck.
I agree it's good to discuss symptoms. I was diagnosed with raynauds syndrome and prescribed various drugs to dilate capillaries over the past 40 years. I've also been prescribed pregabalin for many years for low level pain (this also helps with anxiety). My diagnosis is presumed idiopathic cerebellar ataxia. I'm 81years old and still able to take care of myself although my husband cooks. X
ei Penelope2 I have fredrick ataxia which isn't auto ‐immune, I've been getting frustrated so been looking into any information I can find that might help. Diet changes avoiding sugar which makes sense as diabetes is one of the main causes for peripheral neuropathy, I haven't got diabetes but I'm going to try cutting out sugar as much as possible. Avoiding alcohol, gluten and dairy. I've already got an ìntolerance to milk and wheat/ gluten. Highly processed foods and red meat. Any antì‐inflammatory can help lots of fish and poultry. Rather a lot to avoid so I'm just going to cut out sugar for 2/3weeks and see if that helps, if too much is changed it's hard to know what helps. Vitamin supplements may help B12 or B complex (not made any difference to me) alpha lipoma acid. Massage feet and legs this has helped a little. A warm shower or bath is soothing. Medication that is recommended is prevailing or duloxetinAnti‐epileptic drugs. Maybe this information can help. Carol
Hi there, I found your hereditary Friedrichs ataxia causing peripheral neuropathy very interesting. Gluten and dairy are 2 of the biggest sources of pro inflammatory foods but yes sugar and high carbohydrate foods too. So it seems that PN is not just limited to autoimmune.I have got nerve damage in feet, ankles and legs so feedback systems to the cerebellum are not working properly.
Added to this damage to the cerebellum caused by gluten is why I am so wobbly.
The low sugar, gluten and dairy free diet takes a long time to have a positive effect and with GA can be well over a year maybe 2 even. I hope for stabilisation of symptoms.
It is hard work! Omega 3 is anti- inflammatory so is CoQ10. Magnesium is good for nerves and B vits like you said too. How much we take of these supplements is controversial. Certainly RDA recommended daily amounts are not a therapeutic dose needed for us. Look on the NAF website and they have more realistic levels.
Yes for being proactive, it's hard work isn't it. If you are in UK then a knowledgeable nutritional therapist can help guide you, look on BANTs website.
The Grain Brain book is good so is Why Isn't My Brain Working. Its a minefield out there and no straight answers just try different foods eliminating and see how you feel.
You might find Ataxi UKs autoimmune and GA support group helpful and one of the specialist ataxia nurses from Sheffield is on the next meeting. Details can be found on the support group page.
Best wishes to you.
Thanks I will look into those sites. We seem to need to be pro‐active,I forgot and I think you may have recommended it ,I've just ordered an EMS machine a lot of things cost a fair bit of money so I'm not able to make too many changes .🙂
Hello I'm just curious to know how anyone was officially diagnosed with ataxia. I'm current going on 12 months with neuropathic pain in hands feet and weak legs arms ankles u name it. I'm currently awaiting to see a neurologist to find out a cause. I had nerve test n emg in Feb and was told I have small fibre neuropathy which is the small nerve fibres in your hands and feet. I havnt seen much about this so don't really know much about it. However I've been looking at my brain mri and they mentioned possible progressive cerebellar disease, yet they have said its normal as well so as u do, I've looked online and found out about ataxia. What I've seen so far is me all over symptom wise. Most of my body is weak and ive lost my muscle, every day is a struggle and I'm only 32 a single mom to a 11 year old. I've been off work as a cleaner for 11 months now. I just wanted to know how anyone came about being diagnosed really. Thanks all xx
Hi JodeePersonally I was diagnosed at the UCLH at Queens Square in the Ataxia clinic run by Prof Giunti and her team. So got a referral from my local hospital by neurologist who was clearly out of his depth to there.. This is one of the specialist ataxia clinics in the UK. Please see the Ataxia UKs website. Their help line is very good too.
London specialises in hereditary/genetics as being a cause for ataxia and I had the first level of testing for this. Never had a lumbar puncture though. Tests were negative but a firm diagnosis of ataxia due to the atrophy or shrinking of the cerebellum which could be seen from the MRI.
By this stage I was already gluten free and asked for a referral to Sheffield clinic under Prof Hadjivassiliou which deals mainly with autoimmune and gluten causing the ataxia.
So my advise to you is carry on with your research, PubMed is good but papers can be hard to read. Question your neurologist and doctors. Don't be afraid to ask for referrals and second opinions.
Talk to the ataxia helpline.
Neurologists can be very old school and set in their ways.
Personally I found Sheffield excellent but the wheels of the NHS turn so slowly and if you have gluten ataxia then time is critical.
Idiopathic ataxia simply means they do not know the cause and so push for the cause.
My heart goes out to you with your young child. Keep strong.
There is significant work being done to bring awareness and better treatment for ataxia, but unfortunately this could take years.
Best wishes to you.
urine problem
cerebellar ataxia and thyroid
Is seeing a Neurologist on a regular basis essential?
