Hi Steven:-)
I googled Ataxia and Alcohol.
Then clicked onto www.medscape.com - A practical approach to late-onset Cerebellar Ataxia
Is alcohol the culprit?
I found this on AtaxiaUK (alcohol and ataxia)
Research has shown that abstinence from alcohol, combined with good nutrition, can help stop
the ataxia from progressing.
But, whether or not alcohol is a factor in your diagnosis of SCA5 is entirely down to a decision by
your Neurologist.
Hello Beryl, and thanks for the reply. Alcohol is not the cause of my SCA5 Ataxia, after the MRI, CAT SCANS, and Blood Tests that were ran. My Nerurologist, said it was due to somekind of an hereditary condition. It was suggested that I discontinue the consumption of alcohol. What has been confusing me, over the past year since I was first diagnosed. If this condition is a definite cause of a hereditary factor, what does it really matter if I continue to drink or just stop all together? That/s what my main question has been, when asking my Neurologist and General Doctor. I worked in the HVAC(Heating, Ventelation, Air Conditioning) field, and was also in the Military while being overseas. So by what I'm hearing, who knows what exactely could have triggered this condition. They first thought it may have been alcohol, so they tried the abstinence from that until they found out(or told me?) that it was an hereditary condition. I've been diagnosed with this for over a year now, and still is confused and have questions that hasn't been answered by my Neurologist or Physicians. Sometimes I truly feel, that they don't really now as much about Ataxia as they let on. So sorry about the lengthy reply, I'm just trying to explain in further detail. And thank you again, for the reply Beryl. :-)
How old were you when you were diagnosed? I'm 62, was diagnosed when I was 60. I cannot walk without my walker and even that is difficult so I'm being evaluated for a wheelchair too. I'm curious about your age.
COREY CHANG said:
Unfortunately, mine is a very progressive ataxia. I was just diagnosed in April of this year. And already, I'm looking at a wheelchair. My speech is also affected badly.
I have been diagnosed for a seizure disorder, severe spinal stenosis, Autonomic Insufficiency (no sexual function, urine retention, Hypo- and Hyper-tension, Polyneuropathy, Peripheral Neuropathy, DM, unusual sweating, AFib, etc.), Episodic Ataxia (EA),Diplopia, Chronic Renal Disease, and some other things. Most of these disabilities come and go, some are episodic, some permanent. I still do not know which is Ataxia and which is not. Still not diagnosed though the ataxia specialist said "I do not see how it can be anything else". He needs to see me during an episode to diagnose. As you are saying "very mild", it can be an Episodic Ataxia, which has no or very little symptoms between attacks. I am 68 and still not diagnosed.
Alcohol and drug abuse can cause little "a" ataxia, or exacerbate a big "A" Ataxia.
Each individual's symptoms are different and each form of Ataxia or ataxia is different. I was diagnosed 8 years ago and knew for sure that I had it 9 years ago. There have been times since then that I have used a cane semi-regularly because my walking was too messed up to pass as normal, but I haven't needed a cane for a few years now. I took a medical retirement from my job five years ago and have steadily improved since then. I continued my education after my retirement so that my mental faculties would remain sharp.
Physically, the best I was ever doing was two years ago, when I very strictly avoided gluten, was at a very low weight, and took about a 1 mile walk every day with my dog. I didn't work out otherwise. I felt fantastic and had few days where my ataxia was too bad to drive, read or walk normally.
I am in my 28th year of this disease. When I first started having symptoms, and seeing one neurologist after another, tested for every known disease, ataxia was yet unnamed.Doctors were baffled. I use a rollater walker occasionally, but for the most part, walk unassisted with the telltale ataxia gait.
My handwriting, which was neat and legible, is gone. I use block letters, and even then, my letters can be illegible.
I have found over the years, that my symptoms fluctuate according to my stress level and if I’ve been reading too long. I also have nystagmus.
What was mentioned to me at one time was the possibility of the 6th or 7th cranial ( optic)nerve being a culprit. I never researched the possibilty…i wonder if that has ever been suspect.
Anyway, Alex, hopefully your symptoms will remain very mild…I wish you all that’s good.
I agree that symptoms sometimes take a long time to show up making you suspicious of a diagnosis of ataxia. Did you have an MRI? What did that show? My results showed atrophy of the cerebellum which I accepted as the reason for the diagnosis, but I asked for a second opinion anyway. The second neurologist agreed. So be it. I cannot afford the genetic testing, so I'll let it go. But over course of 7 years, symptoms have gotten steadily worse. Like others say, I need the cane, and the rollator, but I can drive because I am sitting down! I have more trouble walking when I am tense. I lean against walls when in a group, so I can carry on a conversation without weaving all over. But I can converse with friends on the phone and by computer! I am finding out I can't garden anymore. If I get down, it's a struggle to get up and I am constantly in danger of falling. But I can enjoy putting plants into big pots! The worst this summer is finding out that I cannot walk on sand at the beach, so that's out unless I have a friend with me who doesn't mind assisting me plus carrying chairs, etc. But I can sit on a bench at the beach and look at the ocean. So try to find a balance for every bad thing there must be something else you can still be able to include in the "can do" column. My best to you!
Dear Umigal, Wow, your symptoms sound exactly like mine, except I was diagnosed eleven years ago, but recall very, very minor symptoms starting about eight years before diagnosis. I do have a hard time talking on the phone though, as I slurr my speech. Yes, I also have atrophy of my cerebellum and my symptoms have prgressed (gotten worse) over the years. I try to think about all I can still do, rather then dwell on what I can't (do)! We are NOT alone in our journey! ;o)
Thank you for your kind words, Umigal. What made me look for something in addition to OH and disabilities triggered by it, was that some of the ataxia-like symptoms started showing up between attacks, too. I just went for a night walk with my wife. We usually walk hand in hand. I kept bumping into her, or pulled away from her, losing balance and coordination as I walked, each mini-attack coming and going in random intervals. I do not know how to make doctors know that these things are real! They usually ignore it when I tell them, probably because they do not know what to do with it.
I was properly diagnosed Sept last year, though through self diagnosis, I knew a year earlier, after seeing the MRI scan, showing cerabellar atrophy (the neurologist was useless, I insisted on referral to a specialist) I could walk quite normally up to about halfway through last year (2014) after which it got steadily worse until around Christmas/New year 2014, I thought I had a month, perhaps five weeks `ti I was wheelchair bound, but I figured, if I could build up upper leg strength (I was suffering rapid atrophy of upper leg muscles) I could hopefully maintain/improve mobility. So far, it seems to have worked, but I have to do excercises daily, such is the rate of muscle atrophy. Ataxia affects different people in different ways and at different rates. Make the most of your mobity, hopefully it won`t be affected.