As you maybe see ouur forum here is rather slow and quiet.
Ataxia is a raare disease/disorder, but there aare those of us that struggle daily with it.
I am greatful Medhelp has offered this venue even though not much activity happens.
Trust that I continue to monitor and watch ffor posts almost daily to see if anyone needs support.
If you have questions , please do not hesitate to makee a post just because it does not look as no one is reading.
Be well, Amo
hi,yes i see this sight is pretty quiet...and yes there are some that struggle..my daughter has a syrinx T6-T11,she has a centronuclear myopathy,she has ataxia..she is 18 just and has size 1 feet,she is unbelievably cute...but yes..she does have all these problems..and i hope others post also.....
Thank youuu for looking and posting.
Your daughter sounnds like a lovely young woman. I understand somewhat about syrinx, but am unfamiliar with centronucclear myopathy (having to do with muscle i presume)
If youu would like to fill us in somemore hoew your daughter is doing I am interested learning of her type of Ataxia and challenges..
I hope you bothh aare well today and enjoying summer.
hi,thankyou for your welcome note...my daughter is amazing,my friends and family say she is a credit to me..and although i appreciate that..sooooooo much,she is such a fighter and so loving and caring,she is not a credit to me..she is a credit to herself,she is so independant and i couldnt be more proud if i tried. although she has ataxia..its difficult to say what type she has because she has a syrinx.and yes..centronuclear myopathy is of the muscles.so she has an extremely rare muscle disease which doctors havent come across..they cant tell me what the future holds as they dont know how it will progress..all my daughters symptoms could be caused by her syrinx,her myopathy or ataxia...she has been having sleep studies in the last few years and there was no major concern up until 6 months ago..we have in fact an appointment on the 22nd next week to arrange for her to start having a mask to increase air flow while she is asleep... she was diagnosed with obstructive sleep apnoea after her last sleep study.. it seems that for all her problems she has,its her muscles that are causing some problems but they cant tell us why,when or what...but i know she is going to fine..she is a fighter,and she makes me fight and be positive...sorry for going on..but she really is amazing
It doess become confusing when more than one dx's in the mix! I know I am quilty to trying determine whhat symptoms come from my MS and which to determine from my Ataxia since they caan both have the same.
My doctor have yet figureed what 'type' Ataxia I have. It has been years they ran genetic markers and they have identified more since. But I know there are more folks with idiopathic cause. I have two siblings with 'something'
I am hhappy to hear your daughter will have her mask. I presume a C-Pap?
Hopefully with better sleep annd O2 she will feel some help. And hoping the first mask is the right make for her.
May I ask how she is doing?
Unanswered questions and facing uncertainty builds character, so I believe you and she must be very strong team!
Be well and know thhere are people who care.
p.s. can i suggest breaking paragrahs to smaller lines, it makes reading a little easier with dizziness and jiggly eyes (nystagmus) thanks
hi amo,looked on medhelp a few times since your post and was wondering as i have not heard nothing back,if its still rather slow and quiet so much so you not replied,is it worth me continuing to post on this site?
Hi, my name is Minnie. I don't know what I have, if it is MS or something else. My neurologist did put a diagnosis of "Ataxia" on my handicapped placard paperwork, so I am wanting to find out if Ataxia is actually a condition in and of itself or if it is a symptom of something else.
Hi, I was rather surprised to find a forum for ataxia on here but relieved too, most of my family brother ,aunt, uncle, cousin, mom and I all have ataxia and have all felt the struggles of living with it. when I first found out that I might have had it, i had gone to the doctors before and had them tell me that what I was feeling was in my head . sometimes I couldn`t walk or anything. so it was unnerving To hear a doctor say that, it wasn`t until after i was officially diagnosed with it , that I started to better understand it, i am happy to have found this forum, so thank-you
And welcome to the Ataxia Forum. Yes, we are some rare birds here!
Wow, you have alot going on in your familly with Ataxia. Doo you have a gene identified for it?
My heart goes out to you with how you were treated by the medical field, I too had one doctor whho would say if I just went home and was happy with who I was that I would be fine!! geezz
I'm sorry you are dealing with this illness, it certainly is difficult and challenging and we need as much support and understanding as we can get.
Feel free to begin a new post to tell more about yourself and how you are coping. Take care and we look forward too seeing you here.
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