Hate this!Hard to make plans!! Neta

I was diagnosed with cerebeller ataxia induced by auto-immune issues something in 2010-- this afterignoring the swaying which first appeared in aound 2005-6. The auto-immune issues were suggested by an allergist in NYC, USA, to whom I told about my lengthy, frequent outbreaks of hives. In the summer of 2011, I had hives for 3 months. Indeed blood tests showed that I had a high level of "bad" antobodies in my blood.A s ubsequent

brain MRI disclosed atrophy of the cerebellum. I have, so far, taken several infusions of IVIg which my drs. think is helping but I am not so sure. I can walk unaided without any device, talk-- although I feel there is cardboard in my mouth. and my voice is softer. My eyes are thank God unaffected. My script writing is virtually gone. I have stopped working but can do basic household chores and go to a private library everyday. After crying alot and feeling very sorry for myself, I was sent to see a shrink for anxiety and depression. Is there anyone in the world like me??? I am based in Jerusalem, Israel, where there is no ataxia group support. I wish there was a more scientific way of determining the efficacy of the IVIg. No one believes me. Is this the worst (for me) or just the beginning?? Hard to make plans. Neta

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  • Dear Neta

    I am so sad to read your letter and all I can say is there are lots of us with Cerebella Ataxia and if you can continue to write your thoughts down this 'can' help Unfortunately we have all been told that there is no cure but you seem to be in a better condition than many of us So far my speech is not going but there are many in our group who are much worse off than you---or me Try to stay positive and continue writing in this blog and at least you will be in touch

    Very best wishes and keep smiling Ted

  • Dear Ted,

    Thanks for your heartfelt thoughts. I am fotunately still at the stage where very few people notice or even know that I have ataxia. I speak normally, though on the quiet side and I feel the "cardboard" though it is not heard. I walk seemingly normally. Signing my name, as on a credit card, is asked of me as if it is the most natural thing in the world. So far, I am doing it. But the knowledge that it is an effort, does not cross anyone's mind. I saw a neurologist in NYC, who said to me 'You have something but don't dwell on it.' Easy for hm to say. I will take your advice and keep writing. I dont understand why in this age of technology and breakthoughs, this disease is still not understood.

    Best wishes,

    Neta

  • I too was diagnosed in about 2010 with CA and have gone through the same feelings as you. Sometimes reading this site and the things that can happen fill you with dread so now I only read the suggestions to help with CA. I too have been very depressed but I think I am coming through it and have been seeing a Life Coach for Neuro Linguistic Programming which is helping. We can't do much about what we have got but if we accept it and try and do as much as we can despite of CA I think is the right approach. My family and friends have been so supportive and accept me for how I am now. Hope this helps and you will feel more positive soon.

  • Thanks for responding. Unlike you, I dont accept it. Or at least I havent for a long time. Denial. "So you have ataxia. Get over it," said my GP. Now I see a shrink and take anti-depressents and anti-anxiety pills. Funny because I was never sick or took anything. I am determined to fight this thing. If there is new research, I will inform. So far, excersising alot helps. Of course my inclination is to sit because then I feel fine, almost normal.

    Have a great weekend and stay in touch.

    Neta

  • My whole family, including myself have the Israeli nationality and my husband and two of my children have been born there. We live in the UK and I am used to seeing someone in the Ataxia Neurological department in London once a year.

    In the beginning of 2012 we were in Israel for some time and I looked into finding something similar there. That is when I found out there is nothing.

    I once saw a Neurologist in Jerusalem who knew a lot about Cerebellar Ataxia and told me that he knows the people that deal more specifically with Ataxia. The neurologist I saw is called Prof. Rechesh and he works at the Hadassah hospital.

    As far as an internet forum is concerned, one can live anywhere in the world to join that. Don't you find that, when you hear from the people on that forum about anything that can help with the condition it is possible to find the equivalent where you live?

  • I dont know Dr. Rechesh but maybe I will check him/her out. My dr.s are Prof. Yoav Chapman and Dr. Birmans in Jerusalem.. He is based at Sheba Hospital in Tel Hashomer--- a very professionally-run place and she's in Jerusalem. Right now, I am going with this IVIg stuff because there is a strong suspicion that my CA is auto-immune induced, although Prof. Lossos, another Hadassah expert, who tries to "investigate" non-herditary ataxia, told me he wasn't so sure. Another neurologist at HH told me not to consult too many drs at once because there is an "ego" problem.

    Regarding the Internet, you are correct. Still, I would like to meet someone like me. Thanks

    for writing.

    Neta

  • Hi Neta,

    I also have Cerebellar Ataxia. I had lots of odd debilitating symptoms for years.

    These were dismissed as not worthy of attention by the GPs' in my practice. I knew

    there was something 'not right', I got deeper into depression, it was a nightmare, I

    thought I was going 'mad'.

    Strangely, I seemed to turn a corner on diagnosis. Just having someone believe me

    was a revelation. Like all other 'invisible illnesses' our condition is something that

    is very difficult to live with, obviously there are degrees of severity but it's all relative

    in how you are personally able to cope with it.

    Being able to plan ahead can present problems, I know. I can go weeks when

    symptoms aren't too difficult to ignore, then suddenly it can be like hitting a brick

    wall when I feel everything has come home to roost.

    In the UK, there are support groups but for one reason or another not everyone has

    access to them. So this site is a life line to many people, there is always someone

    ready to listen and offer support, no matter how trivial the query.

    Remember, you are not alone with this. Everyone on this site has the same basic

    problems, and will understand any concerns you have. It's worth expressing any

    question/opinion, you never know who will respond or come up with an answer.

    Just having someone who will listen and not judge can help enormously.

    xBeryl

  • Thanks Beryl,

    Indeed, its very subtle. Like if I was in a wheelchair or had cancer, people would believe me more. Part of the conflict (within me) is that I am very hush hush about the whole thing. I want sympathy but am very tight-lipped. It was very sad (to me) that I could not dance at a friend's daughter's wedding or wear high heels I alos cannot walk on the sand at the beach, something I once loved to do

    .Part of my problem is that I am in a (happy) second marriage and I feel guilty because my husband did not sign up for this. But he's been mostly supportive although he thinks it will vanish/improve.

    I spent alot of time also being jealous of everyone who did not have this. Everyone, including my shrink, keeps telling me that I am not as bad as I think/act. But, as you say, correctly, it's all very personal and relative.

    My very best, Neta

  • I totally understand the high heels/wedding comment, my daughter's

    wedding is imminent and I know her Fiance's mother will be dressed

    to kill! The last time I was on a beach, it was short and sloped severely.

    You can imagine what I looked like staggering along, trying to keep my

    feet and constantly veering off towards the water (remember - most

    people have trouble walking elegantly on a beach). But I still got a lot

    of pleasure from the overall experience.

    Having understanding and support from a Husband builds confidence

    and self esteem, don't under estimate the importance of this.

    I didn't see a shrink, I went to a general Womens Support Group, where

    we had informal sessions led by a Counsellor. Those sessions really

    helped me but some people benefit more from a one-to-one approach.

    Trying to appear 'normal' and fit in as before can be exhausting, don't

    be so hard on yourself, mentally and physically. Funnily enough, these

    days I'm much more relaxed, and actually happier, I try not to beat my

    self up over something beyond my control, and just go with the flow.

    xBeryl

  • Mazal tov on your daughter's wedding. I wish her the best. Actually, in NY., I found fancy flat shoes with a lace up ties and rubber sole. The outside is shiny black herringbone leather. Not bad. I am sure they have them or something similar in posh London... Beach. I did go this summer but staggered to get up. Ugh. No one noticed. My husband is supportive but doesnt quite get what it all means. I look the same so he doesn't mind being my crutch.. You are right. It is exhausting to put up a front but it also gives me a benchmark, if you know what I mean. The shrink seems to know a great deal about ataxia which is quite unusual because aside from neurologists, I find that drs. and nurses have NO idea what it is.. But I will have to leave him soon because he is expensive. My Jerusalem dr. told me to join an MS group even though I DO NOT have MS, she says they can relate to the loss of balance. But so far, I have not done this. Must go now because it is the Sabbath here.

    Yours,

  • I have CA,my daughter got married last year,I only had one year with my third husband before I developed this Ataxia and I am on Anti-depressants.

    I cannot talk or walk keep knocking things over because of co-ordination problems but having said all that I am much happier now than in the past.I think I put the rose tinted glasses on.Don't feel negative about all the symptoms you read about.I don't suffer with fatigue or tiredness,or swallowing problems.My mentalhealth is much better than it has been.

    The Citalopram definitely worked as an anti -depressant for me.

    I do get frustrated but have learnt far more patience.

    A support group sounds a good idea.You have got others who can laugh with you

    My husband likewise didn't sign up for this .But it sounds as if you are no trouble.

    Mine is very supportive but Ataxia is difficult to understand.I think of as [part of our brain is disppearing which is the Cerebellum.We cannot help it.Our brain is an organ like any other

    and it is only a bit of it that is affected.That helps me when I am staggegeri ng along.

    It is not a moral issue ;it is physical.To think in some way it is our fault is false guilt and can be equally destructive.I would be intereted to see if your CA was caused by an anti immune thing.I don't know what has caused mine.

  • Dear Silkwood,

    First of all thanks for responding and your candor. Yes, to anwser your last question first, it is thought that my CA was/is ht on by auto-immune issues and as I have said before, I am being treated with IVIg. Drs say there is an improvement although nothing dramatic. There is a doctor in the UK, names Mario Something, who has worked on this and with whom i have been in contact. Second: my husband is supportive but obtuse regarding the damage this can cause. For example, tonight we are going to a movie---nightmare for me. The anti-depressany I am taking is called Lustral--- Zoloft (standard stuff) in the USA. It stopped the crying jags but ruined my libido and I cant say it made me jump for joy. I don't have a support group; there isnt one here. I have no one to laugh with-- not that this is funny. I guess I shouldn't complain so much but right now, denial, feels"better" than acknowledgement. Neta (Jerusalem)

  • Trying to appear 'normal' and fit in as before can be exhausting, don't

    be so hard on yourself, mentally and physically. Funnily enough, these

    days I'm much more relaxed, and actually happier, I try not to beat my

    self up over something beyond my control, and just go with the flow.

    xBeryl

    ***************************************************

    Thanks for that "xBery" - though when on my "rollator-outings" .....

    But, then I think of my friend Claus who - a very successful lawyer ...once -

    had a stroke and will be spendng in a nursing home the rest of his life

    Regards

  • I hope Claus has the strength to face better days. I have to work on myself. I should complain less. But it just seems so unfair. I meam my parents are 90+ and in good health as are ny older siblings. why me? Neta

  • Yes Jurgen, it certainly makes you re-think your situation when you

    consider what Claus has to deal with.

    regards

    Beryl

  • Celebrate what you can still do! Don't let "ataxia" define you! I know it's extremely difficult. frustrating and challenging! I speak from experience, as I was diagnosed 10 years ago with Sporadic Cerebellar Ataxia (non-hereditary/unknown cause). It affects my gait/balance, dexterity, speech and swallowing. I think it started before I was diagnosed, as I recall times when things didn't seem "right". Do I have small pity-parties at times? Yes, but I'll never give up or give in! I find that exercise (safely) for strength and balance helps my ataxia, physically and mentally. I feel sad at times over this uncontrollable ailment. But, seeing how my attitude is something I CAN control, I try to be as positive as possible! I repeat one of my favorite sayings daily: "I may have ataxia, but ataxia doesn't have me"! This is a great site with wonderful people and you are not alone! Also, as I live in the United States, and also belong to a site called "Living With Ataxia". Check it out, as it's great too! Best wishes ;o)

  • Thanks for responding. I have decided to "ignore this" for as long as I could. Despite what you say, I still feel alone and lack the esteem and pride I once had when I was a professional journalist. I feel very jealous of those who continue (everyone) unimpeded. I am flying alone to NYC-- full of trepidation but determined. Some doctors have told me, "Dont think of yourself as sick." Mentally, the hardest time of day for me are the mornings. By nightall, I feel more hopeful. Will my IVIg treatments slow or stop my decline? The "not knowing" is the hardest thing of all. I also suffer from UTI's alot. Any good solutions? Neta

  • Hi Neta, I by no means expect you to "ignore" your ataxia. That's impossible, as it's always there (at least for me), 24/7. Guess I've had this for so long, that I try to think as positively as possible. I've researched ataaxia until I'm blue in the face and wish there was a "cure". Is the unknown scary, YES!!! I retired 6 years ago (due to ataxia), from my career as a social worker. Hence, It's the "social worker" characteristic in me trying to give advice, to help you feel better...,ha! Believe you me, I know how you feel! Ataxia is EXTREMELY difficult!!! I suffered from incontinence and UTI's for years. I finally had TVT surgery last August and am so much better now! If you don't/haven't already, I'd advise you to see a good urologist. You didn't mention incontinence, therefore the surgery I had may be more for that problem. The solutions that help me, I stated in my previous comment. I'm truly sorry you feel so alone, as there are so many wonderful people out there that have ataxia. I felt very much alone when diagnosed, as I had never heard of ataxia and knew no one with it. Then I started chatting on the "Living With Ataxia" site, and more recently, this site, and found many people with ataxia. The friendship and support really helped me feel better, and not so much alone. Anyway, I wish you the best and hope your trip to New York is fruitful!!! Please keep me posted as I care..., Hugs, Rose ;o)

  • Dear Rose ????

    Thanks for getting back to me. I don't recognize the UTI surgery you mentioned. Right now I am trying to keep it all under control with various antibiotics and powders that the dr. prescribed to me but I think a urologist is in my future. Yesterday, I met a good friend for lunch and she didn't even detect anything wrong with me (of course I didn't stand up or walk home with her although, for example, at a family wedding two cousins noticed immediately that I was unsteady. I am in this weird state between saying "something" and saying nothing. I am not sure what to say. I stick to the auto-immune line (because my ataxia is believed to come from somre form of auto-immunity issue-- I have very high--bad--antibodies.

    Maybe you now this. How can I tell if the IVIg (excercising? acupuncture?) has helped me and that I have plateaued or more deterioration is expected?? I indeed wish I had someone in the flesh to consult with but I don't.I do see a shrink who constantly tells me that I am better off than I feel/say and have to work on my attitude and not feel so consumed by the ataxia. For example if mu husband buys tickets to the theatre, I will be obsessing all day about getting there, reaching my seat, getting home, going to the bathroom etc. It's insane!!!At least there is a site as you say. Thanks again, yours, Neta

  • Hi Again Neta, I'm sorry, but I don't know about IVIg therapy. I do know that exercise for strength and balance has helped me/my ataxia. I've never had acupuncture, although I've thought about it. Maybe you'll get the answers you so deserve when you go to New York.I do understand "obsessing" about doing things, as I tend to do that somewhat also! Things all workout somehow though...,ha! I use a cane when I leave home as this helps give me more stability and prevent falls. Do you use anything to get around? I have no idea why I have ataxia, my parents are in their 80's and I have a brother and sisters. No one in my family has ataxia except me! Even further back, there's no one. Luck of the draw I guess...,ha! Hugs, Rose ;o)

  • No I use nothing so far. There is no history of this in my family and eveyone seems to think my "defecit" is small-- everyone except me.In my case the drs. think it is auto-immune related hence the IVIg I am tired of exercising, tired of worrying, tired of being afraid, tired of the charade. tred of seeing people, run up the stairs-- not a care in the world, tired of typing wth mistakes and tired of people saying "what? what?".. to me when I speak My uncle just died=== he was 92 and fought at Normandy, maybe that's why I feel down. Also, it's the morning here now when I feel psychologically worst. I already saw a dr. in NYC. He is a prof at NYU, and he confirmed my diagnosis and treatment. Hugs N

  • Hi Again Neta, I'm sorry, I thought you were still going to NYC when I wrote my last email. I'm not sure why I thought that, but please forgive my memory as I'm almost 59 years young...,ha!. It sounds as though the IVIg therapy might be helping you, not that it will completely ''cure" your symptoms, but stabilize them! I know ataxia is frustrating, challenging, tiring, scary (regarding the future) etc., as I wish mine would just go away! After 10 years, I don't think that will happen...,ha!, so I'm just trying to preserve what I have left the best I can. I do understand how you feel, as I see people walking and going upstairs etc., and wish I could still do that! I can't remember how it feels to be able to, and that makes me sad! Oh well, enough about me. My sympathies to you regarding the death of your uncle! Yes, that is probably contributing to how bad you're feeling today, as well as it being morning. I'm on an anti-depressant, and mornings used to be hard for me before I started taking it. Try to keep in mind you are not "alone" with this. If it helps to chat about it or anything else, I'm a good listener...,Hugs, Rose ;o)

  • Thanks for answering me. I just turned 58 and was diagnosed 2 years ago but the "swaying" began before that. I am trying to remember that I am not alone but see no one like me anywhere. I went for another IVIg treatment today and then to the home of my late uncle where the family gathered. Many of my cousins were there. They all seem fine. I was very fearful of falling on them. Scared to go to the bathroom. They are nice but a clan. They are not the kind of people who are particularly comforting.They are more of the pitying kind. I hate unsolicited empathy. I go to NYC often because I have my daughter and parents there. I am scared to death of the future. I am also taking anti-depressants (after I have eaten lunch) now but I find the effect null, as in zero, I also take an anti-anxiety pill which is more effective.My husband talks alot about the future. It makes me even more anxious.I dont understand why NO ONE on earth talks about this. The news here just announced an enormous brain reseach project. Everything sounds so hopeful. I find this whole "disease" very confusing. Yours N

  • Hi Neta,

    Re your comments about the family gathering. As you know, we have a wedding

    next month and I have serious concerns about that! I share all your fears and

    it's starting to prey on my mind. Even the thought of eating, and being part of the

    focal group is starting to freak me out. Night-time entertainment is another issue,

    music will be loud, lighting will be low, I would love to be able to feel uninhibited

    and enjoy it. There will be separate quiet areas, but who really wants to be there,

    at a wedding?

    I hate pity, sometimes it's hard to differentiate between that and genuine concern.

    Yesterday, I was having my hair cut. The hairdresser knew about my problems

    and was really nice, but I felt like a liability in the salon, an accident waiting to happen.

    So, is it better on the one hand to explain to people why you find it difficult to do

    certain things, safety comes to mind. Or, should you brazen it out and blend in

    as much as possible, and try not to be the focus of attention.

    Anyway, I intend to have a good time at this event, come what may!

    Regards

    Beryl

  • Dear B,

    I understand you totally. My family is not particularly helpful--either they pity, enter a denial phase or collapse, as in "holy shit"!!! I have come to hate weddings because of the problem with the heels and the fact that I cannot really dance and I feel like I will tip over sand fall when I air kiss relatives. My shrink thinks my obssession with heels and looks in general, is nuts, I just think he may not understand women

    .But here you are mother of the bride or groom. So just sit alot. Here, you call the shots. Everyone will think how nice, you don't want to overshadow the bride (or groom). I am assuming your kids, husband and maybe close friends know of your limitations. Believe me, I am "with" you on this one. My husband keeps referring to events in the future and I cringe, as I mentioned. Maybe I will be dead or in a wheelchair--although everyone tells me I "seem" fine.

    It sounds like you are somewhat "futher along" in this "marvelous" ataxic situation than me so maybe it makes sense to say something to someone. Maybe more people know, than you think? Do you have to walk down an aisle? Are you wearing a gown? The not-knowing is a frightening thing but even so I think the "degeration" is slow. So It's not like you will wake up one day and be unable to move. (These are the nature of my irrational thoughts in the a.m., when I wake.)

    I am pissed-off today because my prof-dr. leaves me very terse email and I don't have his mobile. I beginning to feel like a giant pain in the neck.

    I have no idea if I hit rock-bottom (for me) or worse is yet to come or it already came and I am not paying attention to it. Tapping in the dark. On Monday, I am flying to NYC alone. The flight is fine because I sit all the time; although the airports, with their lines and numerous open-close security checks are a nightmare but I will muddle through somehow. Enjoy the wedding next month if you can. So you are not perfect. So be it. Relax and don't freak out. Don't think too much Whatever happens, happens. Que sera sera. (I am trying to develop this attitude myself beause I worry about everything-- even a dentist's appt..)At least you will be there. Take deep breaths.Yours, Neta PS Did you ever do work or anything with magnets?

  • Hi N!

    My daughter (Joanne) is getting married. We had a few glasses of

    fizz and had a try at her first dance, which she is worried about! I

    don't know who was worse, her or me! I would love to wear heels,

    but practicality is a must, I've got flat black patents, black sequinned

    dress, purple/lilac jacket, hair up with sparkly pins.

    The wedding is to be held at a 'Boutique Hotel' which as you probably

    know is very eclectic, a bit weird actually! It's a civil ceremony, and

    we're staying there 2 nights. I may walk down the aisle with my son.

    Mentally speaking, I do seem to be at a more 'accepting' stage with

    Ataxia. I totally understand where you're coming from, I've been

    there, I know what it's like to be at rock bottom. I've had worrying

    symptoms for about 20 years, these forced me back and forth for

    medical advice, I was given the brush-off many times because

    none of tests pointed to anything specific. Only when I complained

    of having falls and had an MRI, which showed Cerebellar Atrophy,

    was I taken seriously. I was so depressed at this time, not simply

    because of the diagnosis, but because I'd spent years brooding

    over the fact that nobody was listening, I thought I was going mad.

    My husband also thinks ahead, he's 67, I don't know when he'll ever

    retire because he's the lynch-pin in our family business. But, he dreams

    of doing a cross-county trip of the USA, and refers to it often! Now that

    really freaks me out! We've had numerous holidays in Florida, so I know

    all about queuing, airport security checks and baggage problems! But

    you being a seasoned traveller, I'm sure you'll be just fine.

    Sincerely

    Beryl

    P.S. I don't recall working anywhere I associate with magnets.

    I was never diagnosed as having hives, I've seen pictures, so I know

    what the condition looks like.

    For a while I had a rash which would itch, come up as a lump with a large

    red area around it and sometimes weep.

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