wrong diagnosis

having been diagnosed with mixed connective tissue disease I have now been diagnosed with cerebellar ataxia . I cannot walk, fall over a lot and have problems with swallowing and speech . I have a very good neurologist but the condition is hard to cope with as I live alone ( my partner of 21 years left me as he said \I was too disabled) I do feel my life has ended, the interests I had, music and walking I am no longer able to do. some friends are ok but some have dropped me . each day is quite a struggle. any ideas on how to cope ?

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  • I had to look this condition up before responding so I'm guessing it is rare? I have RA with some as yet unidentified neurological component which affects my senses, gives me painful parasthesia (progressive) and makes me feel dizzy and affects my ability to control my temperature. So although nothing like as serious as yours I can at least offer you much sympathy and a little empathy too.

    I wonder if you can find others suffering from the same or similar in your area? If not would MS, Parkinson's, MRA or Motor Neurone groups share enough of your symptoms to be useful emotionally and socially? I ask because I have had a lot of comfort and support for my own limbo connective tissue and neuro symptoms and struggles for re diagnosis from friends I've made on various HealthUnlocked communities - to the point where I've actually met and regularly text and email six or seven fellow autoimmuners from the RA, Lupus and Vasculitis communities. This new HU outlet and support has helped me with my everyday friendships and family relationships.

    Another thing I've found helpful has been counselling. My GP referred me for when I became severely depressed after yet another nasty drug reaction. Just being able to speak to someone who isn't a friend or a medical professional has helped a lot too.

    I read that Cerebellar Ataxia affects the act of communication and this must be the most important human need now being compromised for you. Having grown up with profoundly deaf siblings and a son with Asperger's I know how important communication is so this is why I offer these suggestions in the hope that they might improve your quality of life significantly. Your neurologist might be able to help with these too as you say he or she is very good?

    Best of luck,

    Twitchy

  • It seems to me that your partner is not worth living with and when you have got over the habit of him you will feel relieved. You say that you have a good neurologist and that is a big plus in your life.

    I have found that as far as friends are concerned, you have to do the smiling and comfort them as otherwise they don't know what to do for you. To do that you have to accept your difficulties honestly so that you become able to communicate easily with others. Please don't isolate yourself. Join the U3A (University of the third age) in your area and take part in their activities and friends. Find them on line. I have been a member for the last 15 years. Their philosophy assumes that you have had a life, interests and so on and want to find further interests.

    Good luck,

    Love

  • I'm sorry for your current pain. I can empathize, but I'm not living it. I fear that rejection too.

    For the little comfort this is.... I find you valuable. I m glad to meet you and stand by you in your fight.

    Therapy helps me to....

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