peripheral neuropathy and ataxia

[Amynah]

Hi everyone - I am just wondering if anyone with ataxia has been diagnosed with peripheral neuropathy. Thanks

[viv112]

Hi, if we have peripheral neuropathy it affects the nerves in our feet and consequently our proprioception. When this deteriorates it affects our balance and our ability to walk in darkness or stand with our eyes closed.I was diagnosed with PN about 6 years before I noticed my balance problems and now after another 6 years it is slowly getting worse. Your doctor can refer you for physiotherapist which you might find helpful.

[wozzer45]

Hi,

yes I have peripheral neuropathy ugh! Apparently, it's worse than my CNS issues. Was tested for charcot marie tooth because my ataxia symptoms are quite mild my problems are mainly due to pn but whatever it is it's not charcot marie tooth.

It effects my feet, legs, arms and hands, I think also the left side of my face (not sure!) - can manage ok with it - tingling, burning, numbness. Have been taking Lyrica/pregabalin for past 2 years for neuropathic pain (burning pain) and am trying to come off it at moment as many of the side effects of drug are also symptoms of ataxia (great!!)

My husband gave me a fitbit for Christmas and I've been trying to exercise more since then and I feel it has helped I find yoga particularly good for pn - I had done yoga a bit over the years while healthy and have put together my own routine with the help of a good book. It's gentle and all of the stretching really helps tight muscles. I also found exercises for charcot marie tooth on youtube and I find them helpful also - again stretching and strengthening exercises. Hope this has been of some help.

Liz x

[tedjohnson]

Hi. Amynah. Yes I have been diagnosed with PN but they have given it the name CANVAS. It is Cerebella Ataxia. with eye and sight problems (call it an added special offer----ug!) it unfortunately adds to the problems of Ataxia but I have been told that there are no exercises which will help Perhaps someone else may be able to help and advise you (and me!!)

If you want to talk some more you could email me but in the mean time take care and good luck

Ted

[pollybanana]

Yes, I have peripheral neuropathy, it is one of the worst things. Constant burning and tingling in my legs, feet and sometimes my arms and face. I was on lyrica then gabapentin for a couple of years but it made no difference. One of the side effects, weight gain,did it for me and I can't get rid of it. Weaned myself off eventually. Don't have any answers. If you find one, please let me know.

[BlackRaven135 in reply to pollybanana]

Diagnosed with small fiber which the neurologist told me is associated with a lot of ((((((((((((((((pain))))))))))))))))). She was right.

[Amynah]

Thank you to all who responded me.

First I would like to share with all that i was not sleeping at all because of burning, aches, etc. and I asked my GP to give me sleepuing tablets - he gave me Zopiclone 375mg and told me to have it with paracetamol 500mg everynight. I take it at 10pm and by 12pm I am asleep and get up refreshed next morning at 8am.

I also have banana and Cinnamon tea after the Zopiclone and paracetamol.

I can say that my jerking has reduced.

Lets see how long this lasts - Do ask your GP because you will need a prescription for Zopiclone.

[pollybanana]

I don't know where you live but a lot of doctors won't give sleeping tablets like zopiclone for more than 2 weeks. Only as an intetim treatment. I have had them beforen and yes, they did work. Now on 50mg amytriptylene but it doesn't stop the pins and needles. Thanks for your imput.

[DeniseLB]

Hello, I was diagnosed with PN back in 2015 but mine was changed to Ataxia in 2016 in March 2016 after they did an electrodes test on my legs, I get burning hands and feet. I agree with all the other posts regarding symptoms. Be careful of any of the drugs that you get prescribed as the side effects can be worse than any good they can do you, I am not on any drugs now, but my GP is also reluctant to give out sleeping pills and did only once when I had not slept for over two months. I find exercise helps, not able to do much at the moment as I broke my ankle, but just keep trying to do as much as you can. PN is quite a general diagnose I found and normally given just because of the symptoms I am still trying to find out what my cause is as without it I am pretty healthy.

Whether it turns out to be PN or Ataxia I have found that the symptoms are very similar and you will get great support on this site.

Denise xx

[Hidden]

Hi there. I’m new here but just saw in my neurologist’s letter that I have mild ataxia. She previously confirmed small fibre neuropathy.

I have an autoimmune disease called Sjögren’s and this can often cause small fibre neuropathy which starts as extreme painful burning. She has also mentioned ganglionopathy. However she has been very unsupportive about this and I feel a bit abandoned to my fate - which is numbness and tingle/ pins and needles everywhere and very poor balance, odd gait, difficulty sleeping, standing still and unable to turn my head while walking without losing my balance.

I wonder how many people actually have an underlying cause for their PN and ataxia such as Sjögren’s? My neurologist says she is concerned I have heightened health awareness but if I wasn’t good at research I’d never have had my Sjögren’s diagnosed and now Ataxia.

[Guyb in reply to Hidden]

I suffer from ataxia and neuropathy under care of Prof Marios Hallam infirmary sheffield im still waiting on special blood tests.I was on gabapentin and later pregabalin didn’t help just massive weight gainlidocaine patches help so does tramadol to a degree stay clear of fentanyl I got up to 100mgrms and was hooked coming off is hell

[Klutzy]

I was dx with PN last year. I am NOT diabetic. Sorry to post when I'm not officiallly dx with Ataxia. But, I have symptoms of it, which is seen with tandem gait, Rhomberg and finger pointing test. Also have loss of fine motor skills, difficulty going down stairs, can't stand with legs together and very wobbly when walking and turning head.

I have numbness and tingling in hands, feet and now more recently jaw and chin. I also have burning on one side of face and diminished reflex on one leg.

For PN, I take supplements Alpha Lipoic Acid, CoQ10, Carnitine and Riboflavin (B-2). They seem to lessen the burning sensations.

[penelope2 in reply to Klutzy]

Hi KlutzyKnow it is a long time since you wrote this but I wondered how you are?

Was not diagnosed but think I had peripheral neuropathy. No diabetes but diagnosis of Ataxia.

Again self diagnosis after much research think I have gluten ataxia. So GF now and dairy free.

The ataxia symptoms have diminished but another year might see more improvement.

Your symptoms sound like classic ataxia and wondered if anyone had mentioned about gluten to you. There's lots on the coeliac UK website.

I too take lots of supplements.

Best wishes

[JZillet]

Yes. I was in hospital for 6 days for battery of tests. MRI, CAT SCAN, bloodwork, EGG, spinal tap etc... Neuroligist said it was ataxia, but when I was discharged, paperwork said PN. My thoughts are ataxia is a form of PN. Regardless, it is no good. Had it for 3 years now.

[ninotchka]

Hi, I just joined so may be late in responding. Yes I have been diagnosed with peripheral neuropathy as well as Cerebellar ataxia. My neuropathy is not painful but causes numbness. My left ankle gets extremely dark red/purple when I'm upright. It goes away when I'm horizontal. The bottoms of my feet and my shins are not totally numb but do not feel things properly, so I cannot drive, or walk in the darkness. There is some tingling and burning but not enough to take medication. This has been going on for several years. Some days are better than others. As viv12 said, this definitely affects my proprioception and thus balance. I had an MRI which does show cerebellar atrophy.

[Hidden]

Thanks All.

To update: I’m now under a neuro physio and have learned that I have degenerative disc disease (DDD) with 3 herniated discs at both end as well as small fibre neuropathy (SFN) The neuro PT and my Rheumatology PT are both adamant that the discs aren’t the cause of my sensory ataxia but are undoubtedly making my problems even worse. Both have also observed that I seem to have a resting tremor which they don’t feel is related to either the SFN or DDD.

I see a new neurologist for second opinion at the end of the month.

The neuro PT has given me exercises to practice in the hope that she can retrain me out of some of my proprioception issues - which she says are caused by me developing coping strategies for the pain and loss of sensation everywhere.

Meanwhile my GP has insisted I try Pregabalin for sciatic and pelvic pain now. I can feel the weight piling on even after only ten days due to the gastritis and the pain seems to have worsened. I am going to taper back off it as I hate these kind of drugs and can’t afford any weight gain. I also have discovered that I have a rare form of Vasculitis which I don’t think is helping much!

[geneticallygeneric]

What is a neuro physiotherapist, how is it different from a regular physiotherapist? I tried many physiotherapists, didn't find any useful.

[auntiesally]

I dont know but am seeing one in the next couple of weeks, and I will let you know

[ddmagee1]

I have been diagnosed with Ataxia and Parkinson's Disease. I, also, have peripheral neuropathy, of feet, hands, and some facial numbness. This has all been getting progressively worse, in the last couple years, to the point now, that it bothers me a lot.

[BlackRaven135]

I was diagnosed with peripheral neuropathy (small fiber) some time ago byspecializing test by US Veterans Administration

(I am not a diabetic and neither is my sister who is also suffering from

peripheral neuropathy)

I was thoroughly evaluated by a Veterans Administration neurology

physician due to numerous falls which have occurred here at home

and away.

I was also evaluated by a physical therapist and later evaluated by a team in a 'fall clinic' (have taken 7 falls)

The neurologist in charge said they are unsure if what I am

experiencing is peripheral neuropathy alone or in combination to

damage that occurred to the left side of my brain during brain tumor surgeries in 2003. They all used the word 'ataxia'

I had forgotten until my sister recently told me of how she

is suffering from some unbelievable symptoms (has an appt on 5/19)

Recently I began doing research dedicated to the topic and found

that I can relate to many of the symptoms other than balance

It has become more disturbing e.g

Poor coordination

Unsteady gait (feel at times intoxicated)

Poor balance (use a cane)

Difficulty with fine motor tasks,

AND

difficulty in swallowing which is alarming

Given that I live alone, I have had to make some changes e.g.

moved from my master bedroom to first floor bedroom

(2 flights of stairs and I have already fallen down a flight but next time

may be fatal)

The worst fall was in Oct of '21 here at home

(where most of the 6 falls have occurred)

Sorry to be so long winded