Ataxia Pancytopaenia

[hab29]

My consultants think I have Ataxia Pancytopaenia and I was just wondering if anyone else had this diagnosis

[DeniseLB]

I just read up on your diagnosis as I don’t actually have one myself yet and over two years. I hope someone with your diagnosis does reply but I am sure you have been reading yourself. Just having the label of Ataxia is a big thing, just scream at everyone that you need help from and do whatever you can or feel like doing. I am going through the loss of tissue part and I am degrading it seems, so much so that another electric shock is soon to be had. Just keep talking to people on this site as there are so many that are a real inspiration and they will get you to laugh about everything.

Denise xxx

[february]

Dear Had29, To be completely honest, I've never even heard of the type of ataxia you may have. If you don't mind me asking, what does pancytopaenia mean? I was diagnosed Sporadic Cerebellar Ataxia (unknown cause, progressive, symptoms 24/7), which just means I (and my neurologist) have no idea the type of ataxia I have, as mine is idiopathic (unknown cause)...,ha! I hope you hear from others that can relate to your type! My best to you...,:o)

[tedjohnson in reply to february]

Dear hab29

I can't pronounce it never mind tell you what it is!! I googled it and there is quite a lot of info about it. I would suggest you go and see your GP and tell him you want a blood test because very often reading about it on the net can give you the wrong info and cause you unnecessary worry. I have got something similar but won't bore you with the details other than to say after a blood test I was given treatment which proved very good but I hasten to add that my ataxia is separate from the other thing

Take care and good ,luck. Ted

[hab29 in reply to tedjohnson]

Hi Ted, as my immunologist and neurologist are already involved in my genetic testing there isn't any point in getting my GP involved as well.

I already have treatment for the pancytopenia side of things as I have an undefined immune dysregulatory disorder.

I was just hoping to talk to anyone else with the diagnosis.

I'm glad the treatment you are having has helped.

[hab29 in reply to february]

Hi february. You can read about pancyopenia here healthline.com/health/pancy.... The ataxia side is progressing but little is known about the condition as a whole they cannot predict how future symptoms will show themselves or whether the progression will continue. I hope you get an answer soon.

[february]

Dear Hab29, I appreciate the link, as well and your kind words for me...,thank you! I know what pancytopenia is now...,my best to you...,:o)