Cerebellar Ataxias

Discussion in 'Fibromyalgia Main Forum' started by Missizzy, Jun 4, 2008.

  1. Missizzy

    Missizzy New Member

    Just checking in periodically to see if we have any new members diagnosed with any of the spinocerebellar or episodic ataxias. There's a few of us here who also suffer from ME/FMS and I'd love to share notes. Some of the ataxias are familial and some are idiopathic (occurring for no known reason).

    The symptoms are varied: ataxia, fatigue, slurred speech, headaches, hearing and vision degeneration, tremor, bladder issues, cognitive deficits, loss of handwriting/reading skills, seizure. These diseases can hit at just about any time but most commonly in the 20s-50s. Some are gradual onset and some are sudden onset.

    This is the diagnosis that my doctors feel is most likely for me. I also have all the symptoms of ME, except for the pain. I did not have a viral onset but what is referred to as a vestibular assault.

    Let me know if this sounds familiar to you or rings any bells. I'm so hoping to find a good specialist who might have some hope for treatment. I'd also welcome being part of a drug study.


  2. boscosmom

    boscosmom New Member

    are they VISIBLE??? apparently, no one can tell on me...and i have seen MDS neurologists...i refered myself to them...i even got one to try my on the parkinsons med (sinemet), that is how they dx pd and it didn't work.

    i have spoken to you b/f...ty for your info. sc
  3. PainPainGoAway

    PainPainGoAway New Member

    bump...I have SCA 3, a spinocerebellar ataxia...anyone else?
  4. malinta

    malinta New Member

    I was diagnosed with CFS/FM in 1996. I was diagnosed with CA in 2007 when I was 51. This is all new to me and I would be intterested in sharing notes too. I have slurred speech, bad tremors, and seizures. I spent over a month in the hospital and haven't received any answers.
  5. Missizzy

    Missizzy New Member

    Hi Malinta--I'm pleased to hear from you but so sorry about your diagnosis. Can I ask how you were diagnosed and where? I have seen numerous neuros, had every test known to mankind, and been to the Mayo and they are still not sure. My GP's best guess is Episodic Ataxia. Can you also describe your onset and whether you have a familial connection. I'm assuming that, like me, you have the CA, and then the ME symptoms on top of that. Is that right?

    I looked back at your prior posts and note that you take Klonopin. That drug has been a godsend for me. Is it still helping you? What is your daily level of activity like? All these questions!! I'm sorry but there aren't that many of us here and I think it's good to share notes.

    Cindy (painpaingoaway) and I have learned a lot from each other. It's good to see your name again, Boscosmom--how are you doing?

    Hugs to all of you,

  6. Missizzy

    Missizzy New Member

    Malinta--I don't know how I missed that comment. What are your seizures like and do you know what triggers them? Mine are called audiogenic (meaning brought about by sudden and unexpected noise). The spinocerebellar ataxias are so diverse. I've found that the lists of symptoms are about the only way the doctors figure out which one you have. Seizures only occur in a few.
    Most just aren't willing to do all the genetic testing. At least, that's been my experience.

    [This Message was Edited on 06/07/2008]
  7. PainPainGoAway

    PainPainGoAway New Member

    Hi Malinta--
    So sorry to hear that you are still looking for answers...most of us can relate!
    Do you suffer from any problems with your ability to walk (gait) or have trouble with coordination?
  8. malinta

    malinta New Member

    My hands gradually started shaking, and my speech started slurring. I went to the neurologist, and he said I had a neuropathy. I also knew that these symptoms could be due to ME so I didn't expect to get an answer. I ended up going to the hospital due to pneumonia, and during that time lost my ability to walk unassisted. The doctors were, of course concerned by this, and my ME symptoms (they weren't interested in hearing about the ME diagnosis) and did a spinal tap, an MRI and a CT scan. I was in and out memory-wise during that time, and will have to pull up my records to figure out which test led them to the diagnosis.

    It was a process of elimination, and they did want to do genetic tests, but the tests would be several thousand dollars out of pocket, which I unfortunately do not have. I was in Strong Hospital in Rochester NY. Their neurology department is supposed to be very good, but I have considered trying to get into Mayo also. I'm sorry to hear that they didn't have any answers for you.

    At this point my activity level is pretty much zero. I have been bedridden since leaving the hospital, which was in November 2007. I was taking physical therapy, but the seizures interferred with it.

    For some reason, standing can trigger a seizure for me. Then other times, they seem to be triggered by nothing at all. I'm still keeping notes and looking for patterns. When I begin to have a seizure, I feel lightheaded. During it, I black out, but my family and PT tell me that I stare blankly into space, and my arms jerk. Afterward, I get very sleepy. My coordination is also poor now. I'm having a family member type this for me, because I'm no longer able to do that kind of thing.

    No one else in my family has this. I'm no longer taking the Klonopin. I've been off of it for two weeks, because my doctor has decided to try me on lyrica instead. He was concerned because Klonopin has been known to cause some of the symptoms that I have. My current doctor is not a believer in CFS/ME, and the doctor who diagnosed me has retired.
    [This Message was Edited on 06/08/2008]
  9. malinta

    malinta New Member


    my coordination is off. I am currently using the wheelchair. I was walking,then hospitalized two months ago. Haven't walked since. After 4 months of failed p/t, and all sorts of testing, Dr's have no answers.

    Hope things get better for us.

  10. lrning2cope

    lrning2cope New Member

    I have cerebellar ataxia. They are not sure if it is our family ataxia or if I had some minor cerebellar strokes . I think I am getting the family ataxia ( great grandfather , grandmother , father , great aunts and uncles have).
    So far : slight tremor , lose balance alot , choke on food.
    I also have ME/FMS , diabetes , arthritis and more.

    I just started ( again ) on this site. Has it been found that cerebellar ataxia can be related to fibro ?

  11. PainPainGoAway

    PainPainGoAway New Member

    Hi Malinta,
    It's wonderful that you have someone kind enough to type for you!
    Your description sounds remarkably similar to both myself and Missizzy...almost like a combination of what she and I deal with.
    She has no pain and definite seizures, bedbound and vestibular problems and an immediate onset.
    I have pain (also have back issues), some nerve damage, abnormal spinal tap, and mild vestibular symptoms (wax and wane), with occasional nausea. I can drive again (since April), although limited and it takes a lot out of me. Mine was gradual onset, intermittent and much harder to pinpoint since I'd had earlier health problems.

    We both have gait ataxia, tremors, slurred speech, bladder problems, weakness, falling (I've only fallen twice in last two months), overwhelming exhaustion, mobility problems...myoclonos, internal tremor, and headaches/migraines and similiar neurological problems.

    Mine hit early. I have one Aunt who also has fibromyalgia and severe osteoporoisis.
    You were not on a very high dosage of klonopin.
    I was on klonopin myself off an on starting about 7 or 8 years ago, I can't even remember. But I went off of it as well as other meds that could be triggering such symptoms (then back on until about 8 or 9 months ago)...some were, and klonopin had stopped helping like it did before but no matter what, I still deal with these problems.
    I have had a mild improvement of symptoms with my foot drop (I can tell, the doctors can't), walking and hope it continues! I cherish each day either way!

    Let me know who the lyrica works for you.
    [This Message was Edited on 08/30/2008]
  12. lrning2cope

    lrning2cope New Member

    Thank you ! It has been a while , but I really need support and I am not finding it with " normal " people who don't have any health challenges . So , I am going to try to be more supportive on support group sites.

    My family has OLIVOPONTOCEREBELLAR ataxia with no known number or genetic link. As of the last time anyone had genetic testing , it was not related to any known genetic types.

    My father , the last one to be tested , for his own reasons won't sign the papers for me to get the results of his test to my neurologist.The reasons are clear to me . He has always been a self centered person , but I won't bore you with that. I don't have the money for the genetic tests myself or I would get them myself .

    Families are so weird. For a long time we had relatives in wheelchairs and people falling and choking and slurring their words but no body talked about it . How dysfunctional is that !

    They also suggested a possible stroke or damage from years of migraines with me . I wish I could have the testing to find our . My dad is a jerk. There I said it. : (


    [This Message was Edited on 06/10/2008]
    [This Message was Edited on 06/10/2008]
  13. lrning2cope

    lrning2cope New Member

    Hi Cindy ,

    I did have an MRI and the neuro . said that I have some white spots , but no shrinkage of my cerebral area ( my dad has maybe 2/3 of his cerebellum gone) I have heard that white spots can sometimes be MS. So far no one has implied that with me.

    Yes , all of the ataxias in my family are adult onset . Mostly around the 40-50 yr mark ( I will be 50 in September) . We can trace them (so far) back to my great grandfather .

    It is sad about my dad. He is distrustful of people sometimes. He is kind of in his own world . Not mentally impaired , just isolated . Unfortunately , he has always had a very disagreeable personality . Oh well , he is really the one who is suffering although I would really like to have his records . My neurologist will be disappointed when I tell him that we don't have access to the records.

    Let's see , did I include all the symptoms in my family ?

    Falling , slurring speach , walking so that feet barely leave the floor - almost a shuffle ,falling forward if leaning that way , falling to the side - I fall mostly to the left-, fumbling around and dropping things alot , choking on food , fatigue , tremor , handwriting and some reading problems , and sleep apnea .

    Oh , my father went to the University of Michigan to an ataxia clinic. This is where he was diagnosed. I sure wish I had the money to go there too !

    It will work out one way or another. I am sure about that. I do get sooo stressed out.

    All of my medical stuff :

    high blood pressure
    adrenal and ovarian problems
    memory problems , which are getting worse
    obesity - gained 70 pounds with onset of fibro.
    sleep apnea

    I think that is all .At least all for now !


  14. lrning2cope

    lrning2cope New Member

    If you or a family member has cerebellar ataxia or other cerebellar issues , could you write about it here ?

    I am really curious as to if this is connected to fibro/CFS or not

    Thank you !
  15. xchocoholic

    xchocoholic New Member

    From reading this I'd say you have sporadic ataxia and the most common form of this type is gluten ataxia.

    If you google gluten ataxia you'll find that it is caused by eating gluten and can account for weakness in your arms and legs and visual problems.

    My ataxia went away after one year on the GF diet, but your's may go away sooner or later.

    There are tests for gluten antibodies but you can't count on them to correctly diagnose gluten ataxia.

    Actually, the way things are now, you'll be lucky to find a nuero familiar with this type of ataxia.

    There are other causes of ataxia, but I'm not personally familiar with them. I've seen reference to vitamin deficiencies particularly D and the B vitamins. However, if your problem really stems from gluten, you'll have to give it up. Gluten can interfere with vitamin absorption. I've even seen some say that dairy can cause ataxia ...

    Good luck with this. Marcia

    Ps If you have gluten ataxia your other problems are probably from gluten or other foods too. Mine were from foods, hypoglycemia and Orthostatic intolerance. So far anyways. I'll know more in a few weeks if this OI treatment fixes my brain fog and fatigue.

    [This Message was Edited on 06/23/2008]
  16. xchocoholic

    xchocoholic New Member

    Hi again ...

    I was on the GF diet for a whole year before my ataxia simply went away. The feeling like my legs were heavy and wobbly just wasn't there one day. That was back in September 2006 and I haven't had that feeling again.

    I get other symptoms from cross contamination with gluten. I ate some foods that were obviously not GF at a HFS open house a week ago and was feeling it all week.

    I know because I'm tired and it feels like my food is just sitting in my stomach again. Which would happen because my villi were damaged again.

    This all started for me back in 1990. I came down with a virus and my body just fell apart. I didn't have serious digestive problems until 2004 - 5 ...

    So you don't have to have digestive problems to be sensitive to gluten. Oddly enough, some biopsy proven celiacs don't have symptoms either. Makes you wonder why they consider the biopsy or tests for celiac disease valid at all.

    Dr. Hadjivassilou says that you have to be anal about gluten in order for this to work. (my words, not his) He's the one who discovered gluten ataxia back in 2002.

    It's not easy having this kind of control over your diet, but it's well worth it to be able to walk. Or in my case, not have seizures, etc. either.

    Hope I answered your question. Marcia
  17. Missizzy

    Missizzy New Member

    I've spoken to all the neuros that I've seen concerning the gluten concern. None thought that this was my problem as my onset was over the course of just a few minutes. My onset was called a "vestibular assault". I'm still confused and unconvinced that cerebellar ataxia and/or olivopontocerebellar ataxia can have that sort of onset (I've never read one other report of this) but this the diagnosis I have. The only thing recommended by several neuros was to up my intake of Vitamin E. In fact, if anyone else has had a similar sudden onset such as mine, I'd love to hear about it.

    The Mayo Clinic strongly advised against genetic testing. They said it would be a "nightmare" with the size family I have (of course, we weren't even considering the adopted children) and complicate insurance and employment for my children plus be a "shot in the dark". I have to say I was quite surprised at this as I dearly want to protect my grandchildren and prepare everyone for this possibility.

    When I headed to the Mayo, I had two expected grandbabies on the way so you can imagine my worries. One little girl was born completely healthy but the other died a couple hours after her birth of Beckwith-Wiedemann Syndrome. It was determined that the chromosomal flaw was carried by my son. I've been assured this could have no connection to ataxia but I still worry. I've called and spoken to all my living elder relatives and ataxia has not shown up at all. Cindy suffers greatly with her pain but I'm almost envious that she at least knows what she's dealing with. And yes, Sweetie, I'd gladly bear some of that pain for you if you'd wrap it up and send it to me. I mean that.

    I'm of a mindset that all of us who suffer from ataxia, tremor, seizure, and other central nervous symptoms as well as F/M or ME, have some related syndrome. I'm not sure if it's Multiple Sclerosis, SCA, OPCA, or an as yet unnamed syndrome. I think only time will tell.

    Has anyone ever found a really good website and board such as this one for ataxia? I've searched and searched and come up empty. Great Britain has some good resources as well as a great video you can watch about a sweet young couple who both suffer from ataxia. I'm starting to think that there must be an awful lot of us suffering in isolation and confusion with this disease.

  18. ironspine

    ironspine New Member

    My husband's family has the same disease you do-OlivePontine. His grandfather, mother, and 2 aunts had it. Now his sister has it. In his sister, it showed up when she was 44, which was the same for the rest. She is getting worse, with slurred speech, unbalanced walking, choking on her food. We were told thru genetic testing that it's a 50/50 chance of passing to children. Either you get the gene or you don't. My husband hasn't shown any signs of it and he's 44, which probably means he doesn't have it-and my children won't get it. But with his sister, with 2 girls, it's 50/50 if they get it.
    I also have scoliosis, but I know that when my husband's mom had the ataxia, she got a bit of a curvature too.
    We live 1 1/2 hours from University of Iowa Hospitals-a well-known research place. My sister-in-law is at the top of their list for new drugs or trials. Right now she is trying accupuncture, which she says helps a little, but I don't see any difference.
    The family was very hush-hush about it too. We couldn't talk about it, and I thought that was really weird. His dad is a jerk about it-was mean to my mother-in-law, yelled at her when she needed something (she was in a wheel-chair!) But he also bought whatever was needed to make her life easier. I couldn't get any information about it before I got pregnant. It's getting easier, though, I can talk to my sister-in-law easily. His dad, tho, seems to be embarrassed by the way she walks in public, and I think that's a shame. He needs a kick in the ass.
    She doesn't have fibro, but is always tired.
    Good luck,I'll be thinking about you.
    Hugs to ya,

    [This Message was Edited on 07/03/2008]
    [This Message was Edited on 07/03/2008]
  19. lrning2cope

    lrning2cope New Member

    Thank you for writing about your husbands' family ataxia.

    I don't understand why families have to be so mean when it comes to disabilities. My grandfather was mean to my grandmother when her ataxia kept her from doing things. She was almost in a prison in her own house. He grumbled with every little thing he had to do for her. I am determined to change that . I never make my daughter feel bad for being herself . She is who God made her to be . I give her the total exceptance that I never had and I hope she carries it on to her children.

    Ataxia can sometimes look like someone is drunk. Maybe that is why our families are so ashamed of us. Too bad they can't be supportive instead and educate people to what is really the problem

    Thank you again for writing and the support !

  20. PainPainGoAway

    PainPainGoAway New Member

    Thank you for writing back-- I talked to my father and he said he still drinks beer (forgot about that) and eats flat bread or tortillas occasionally.
    I still may give it a try, if even for the brain fog.