Non Genetic Cerebellar Ataxia

[maggsataxia]

Hello all, My name is Margaret and I am reaching out to people who have non genetic Cerebellar Ataxia. I would like to know does anyone have the same problems as I do? I am unable to use a walking stick or crutch to help with my balance. I also have face paralysis. About 12 years ago I started to have a problem in my throat that both I and my doctors are still confused on. It feels like I am constantly swallowing and trying to catch my breath. This can last for a minute or so and my voice becomes croaky and distorted while it happens. Sometimes this can feel like trapped wind trying to get out but cant get out, it can be uncomfortable. 

I am just wondering does anyone here have the same experiences with their Ataxia. I look forward to hearing from you all. Thanks

[february]

Dear Margaret, At this time all the dominant and recessive genetic testing for the known ataxia's I've had has been negative. My neurologist thinks all ataxia's are genetic (just his opinion) and suspects I have a recessive form, although no one in my family, as far back as we know has/had ataxia except me. He thinks the type I may have has skipped several generations. Therefore, I gave blood to have genetic "genome" testing and am still waiting for the results. Apparently, this is a more specific type of genetic testing. Anyway, I was diagnosed with Sporadic Cerebellar Ataxia (idiopathic/unknown cause/ symptoms 24/7), although I had very minor symptoms starting about eight years before my diagnosis. My ataxia has progressed over the years, as I started using a cane about five years ago, although I'm not sure how much longer I'll be able to. My next step is to get a rollatorI can use indoors. I have trouble swallowing (especially liquids) and cough/choke frequently. Also, I can relate to to your croaky voice and breathlessness, as that happens to me also. Ataxia effects so many things, all we can do is our best, as little is known about it! Are you able to use a rollator, as I use one for pleasure walking outside? My best to you...,;o)

[xray25]

Hi Magaret i have cerabellar ataxia through a stroke i cannot hold stick or crutch as the tremor in my arms are to much,so have to go out in wheelchair,or a delta if flat and not far. also have really bad tremor in head, have problems swallowing as also have right sided pyralisies from stroke have dysphagia and slight asphagia

[PGee]

Dear Maggs,  I haven't had any testing and don't think I will, as I am childless.  Waiting the results of an MRI.  I don't have similar symptoms, but hope that you will hear from all those that may have similar. It would appear that we all seem to have different degrees of "stuff" and in different amounts!

[sylviagreenhalgh]

it is a hard disease to get used to- it took 4 years for me to be diagnosed . I cannot walk with a stick - I just fall over so I have a lightweight walking aid and I have been lent a motorised wheelchair which I will be tested on soon and then I can get out- last month the consultant noticed I had  Hydrocephalus - which he felt could be causing my balance- unable to feel my feet. poor walking,  it was a struggle to walk so have been housebound for 2 years or so . I had a spinal tap last month - my walking was tested before and after the tap and the difference was amazing but I do not know what they will do next until I see the consultant again in June. the physio is trying to improve my walking but it is hard going. I also have ramps put at the front and back of the house - have been able to get in the garden for the first time for 3 years- it seems that as soon as you make progress in one area than something else happens. I have progressive cerebellar ataxia and it gets worse in fits and starts- on the MRI scan of the brain you can see the damage done to the cerebellum - this was caused by a flu bug I had in 2011 -so you can see the slow rates of progress- I live alone as my partner of 21 years left me as he could not cope so I have got used to that- there are advantages in living alone so I need to focus on that. look after yourself all the best Sylviaxx

[lindadoc]

Hi my 18 yr old son has CA, caused by lesions on his cerebellum. He has trouble swallowing and had a feeding tube for a while, he does what his speech and language therapists describes as a "chin tuck" which helps him swallow. he can't chew for long and eats a little amount often. His balance, speech, co-ordination is affected. It has had a massive impact on his life.

[celtic1888]

Iv been diagnosed for 10 yr now, I'm 46. I couldn't use stick or crutches but ud be surprised how much freedom u get with 3 wheel rolator. I still havin trouble with throat. Been at hospital and knocked out and checked out. Found out I had thickened vocal chords and acid reflux. Been prescribed Gaviscon. I didn't think I was bringing acid back up but there the professionals. Hope my drivel been some use to u

[AnneMenzies]

Hi Margaret how are you. Oh yes I also got non genetic cereballar ataxia. And I got a walking stick about two years ago and I got at first I was walking like Charlie Chaplin my husband said it was funny lol. I also got the same problems as you. And sometimes whenever I eat something I cough and can't catch my breath it's like being under water all the time it is a hoppable feeling. And whenever I am talking to people they don't understand what I am saying it also like I am trying to clear my throat all the time but can't.  I was wondering how long have you had it take care. X

[DBP1994]

I am always looking for the root cause of things and if it's not genetic, then what caused it? I do not have CA but do know someone who does. He is being treated by a very progressive neurologist and has recently started receiving stem cell treatment. He thinks it is helping. I wonder if you have all been seen by a Lyme literate neurologist to fully rule out Lyme disease? I recently read that Kris Kristoferson who was diagnosed with Alzheimer's was recently treated for Lyme disease and his symptoms reversed. I don't want to give false hope, but also know that Lyme disease can wreak havoc on all the body systems. Many doctors do not know how to adequately test. It is important to see a Lyme Literate MD or naturopath who understands how to do the proper testing. Best wishes on your journey.

[ddmagee1]

Hello Margaret. I have been diagnosed with non-genetic cerebellar ataxia. Mine is the result of an artery that has attached itself to the cerebellum, and is pressing in on the nerve roots, causing me problems, to put it simply. MRI has confirmed that, along with invasive artery catheterization studies. This is an inoperable problem, that is monitored. I am on blood pressure meds, which help. Anyway, I have balance problems, and have fallen on occasion. I couldn't walk a straight line if my life depended on it. I've had blunt force trauma, concussions, broken arm, and hematoma, two black eyes, from my falls. A walking stick is of minimal help. Once I start to lose my balance, I can't stop a fall. I, also, have facial numbness. My voice becomes croaky sometimes, and I have some trouble swallowing. I have a partially paralyzed vocal chord, which limits my range, and causes me to get hoarse, if I sing or speak for any length of time. It's not easy living with this. Some days are better than others. As I've gotten older, and the artery has enlarged a bit, the symptoms have gotten a bit worse. My condition is extremely rare, so I don't think you would have that, although it would cause symptoms like yours. I hope the doctor's will be able to help you get some improvement.