Well I had my results appointment today. Ataxia. Cause: unknown. My next appointment is in April. Tests, tests, tests. I’m so so so grateful. My prayers answered. I don’t have any medical training but I believe I know why I have ataxia and my doctor has now twice dismissed my theory. She has one more chance. I wanted to wait until further testing/results but I’ll be a snitch on myself, 😜 head trauma. I know my life and how hard I played. My sister once said to me,”maybe you didn’t just walk away” I’ve broken so many bones I’ve lost count. Car accidents, no seatbelts IT WAS THE 70s! Trip down two flights of wrought iron staircase, I could go on and on and on but I won’t. I’m really ok. I’m thankful it’s not found in my genes. Hopefully and I will always pray for this, they’ll never find it. Have a great evening. Thanks for everything. You all have been so sweet, funny, insightful, educational, honestly, again I could go on and on and on but I won’t. 💕🤟🏻🤟🏻🤟🏻💕🤗😂🤔🤔😎
Doctor appointment : Well I had my results... - Ataxia UK
Doctor appointment
I’m with you Jessie, I have numerous medical problems, I dont want to know about anymore..... at 76, I just want to enjoy the rest of my life! 😀😘 Xx
Stay funny and we’re good! 😜🤙🏻🤟🏻💕
🥴 At a young age (well before seat belts were introduced) I was flung from the back seat of a car and banged my head on the windscreen. That, and several whiplash incidents were once my favourite reason for Ataxia.
Do you know the cause of your ataxia? How much testing? I’m losing weight. What’s the correlation? My doctors appointment didn’t go well. I don’t care for her. I kind of (ok not proud of this) lost my ***t. The lovely young associate (peon) came in and asked a bunch of questions. I politely asked for one thing , tell the doctor to walk in with that one answer. After an exchange of sentence enhancers, she told me. Ataxia: cause unknown. That’s all I wanted. Lead with the one answer. Instead it turned ugly. I gave her the bird. I was so pissed! I’ll test until I don’t. I’m good but surprisingly I didn’t get a Q&A. 😂🙄 I have an appointment in April. Ooh also, I got a call from someone in her office asking if I knew if I was of Dutch descendants. She’s reaching. She’ll never find the cause. She’s not even open to discuss the possibility of head trauma. Funniest thing, I was referred to her by a neurologist out of northwestern university. She was cool.. I wanted to stick with her but SHE insisted. I Started talking to her about head trauma on my first appointment. Dismissed. I brought it up yesterday. Dismissed. She’s got one more shot as far as I’m concerned but my husband will be on me about going so I’ll go.
It may be that she was listening but has to follow a process to eliminate all things to be considered. There can also be more than one cause for ataxia. The injuries might well turn out to be the primary reason (I have no idea) but she would be negligent not to explore all the avenues she is required to medically. We all have our 'moments' where we lose it, mine are few and thankfully private, stress is the cause, we do not have it easy, that is for sure.
The fact that she is asking about Dutch ancestry is interesting, there are some conditions caused by one mutant gene, centuries ago- cannot remember specifically about the Dutch one - what it caused but she does sound knowledgeable and thinking about you. Hang on in there, you may well be right ( I certainly was about one aspect of my ataxia before seeing a more appropriate Neurologist) but process has to be followed to be diligent, thorough and professional. You won't be the first frustrated person she has seen!
Good morning. I’m calm. I thank God everyday for my husband, Paul, and I never fail to follow the prayer with “why the **** does this man love me?” I’m not saying this out of self pity I’m telling you I’m an asshole. I spotted him from my front porch where I would sit and be wildly entertained by the family across the street. The 8th. Kid is my best gf. She actually set me up with Paul. He drove a black Z28. He looked like an actor I’d just saw in a movie, Valley Girls, Nicholas Coppala aka Nicholas Cage. I was so intrigued. Blah, blah, blah, married September 7, 1991. 3 kids. 2 dogs, fish, birds, guinea pig, I feel like we had more pets but I can’t remember anymore. Who cares? Not me! 😂 The man adores me still.... I mean he’s a GREAT GUY wtf is hanging around for... and I thought this way back in the 90s, .... he’s still here. He will take care of it and make sure I don’t get arrested for assault when I see her in April. Real mature, huh? Yea, this is me. 🤟🏼💞💞🙄😎😜🤔🤨🤨🤨🤨🤨🙄😂💞💞💞
Jessie,
You seem like some woman honestly. 😂😊 And i mean that in a good way. Is your app in April with a neurologist?
I'm Lucy, aged and 31 and have SCA2 which has been inherited genetically. Alot of my family have this... I'm lucky in a way to know what type it ataxia i have as people like yourselves search for so long for questions and only receive eventual vague answers.
I really hope you receive the support you deserve.
Lucy 😊
Thank you! I am fun and competitive. I worked in education (Sign Language Interpreter)13 years. One, one kid , Ramus, beat me at Uno. (Card game) I not assuming anything here. Took me many attempts and a shitty British accent to figure out “hoovering “ I got it, vacuuming. Teachers would request my participation. I would only play if the wild cards were left in the deck and you pick up until you can discard. That’s how the game is played. I don’t care if you’re 5 “thems da rules”. Every school year requests were made. I played. Kicked everyone’s ass! Except Ramus I had a perfect streak....damn! 😂That happened last school year. I work anywhere from K-12, college too. Now my hands only fly when I’m swearing at the shit show on tv. 🙄
Haha I'm with you on the swearing, i can't stop sometimes and sometimes it's just called for 😊🤬😊
I'm a criminal justice social worker. Where are you from originally? My daughter, Dakota, is 7 years old and is a very competitive little monster.
Your husband Paul sounds like some man. I'm also very lucky to have my fiance Connor and often too wonder why the **** he loves me haha 😊.
How's your balance and speech doing? I have mild dysthrarsia and at a glance walk ok on a good day. On a tired days i look like I've had a few proseccos.
Lucy 😊
I don’t walk. I furniture walk. My speech sucks. There went 1/2 of my professional career. Imagine I’m terping for a Deaf person, they respond, I go to voice and the hearing client hears slurred, struggling voice. BLOWS! I’m so pissed! I find myself lacking patience. I was a “fast” talker. I’m originally from Melrose Park, Illinois. Moved to Lombard, Illinois. Still here. It’s 16 miles west of Chicago. I love Lombard! I’m a firm believer that the devil you know is better than the devil you don’t. 😂 it’s kind of long running joke. People don’t leave. I attended St. Pius X Catholic school, my 3 did as well.. I don’t remember how this started but 8th grade we got to choose, Willowbrook High School (public) or Montini Catholic High School. I’m sure you can guess which I picked..,? My oldest daughter, Teresa, RAN to Willowbrook. I think my second daughter , Sophia, just followed I cannot remember. My youngest son is currently a senior at montini. They’re all adults now...22, 20, 18. I’m permanently disabled as of November 2019. Bittersweet letting that license go but what to do?
I'm dreading that day... Here's hoping i have a good few years of driving left. My mum who had SCA2 died when she was 48, my uncle when he was 39...my other 2 uncles were 52 and 53 when they died after being in care homes for years. I have one uncle with the illness still living, my cousin was 38 when he died with it and my nana was 56 but she was in a vegetative state in hospital for the best part of 10 years. For some reason, my family seem to succumb to the lllness quite young.
Wow, that was depressing eh? Fuck it, life is for living whilst we can 😊 I'm engaged and hoping get married whilst i can still walk down the aisle without looking totally wrecked drunk. My speech is slowly getting worse but, like you, I'm such a fast talker. It probably would help me to slow down but hey ho. Do you take any vitamins that you find helps?
Lucy 😊
You know I never heard of ataxia. Diagnosed in May 2019 and the downhill spiral is more like a me being chucked head first down a frozen toboggan run and of course I didn’t get a toboggan. I don’t know what you’ve read but this is what I cannot wrap my head around. What is the correlation with weight loss and ataxia? Oh on the vitamins, oh you’re gonna love this...😂😂😂 I always take supplements. For insomnia the “holy grail “ is Source Natural. It comes in orange and peppermint, sublingual . I prefer peppermint. Dr. Perricone supplements. For healthy skin. 😂😂😂😂😂🤨🤨😂💞💞💞
Yes. April.
😏 I have had intensive testing which indicated a partial link to a mutant gene, but it wasn’t 100%, so my Neurologist disregarded it. At the moment I’m waiting for results of a test for CANVAS (Cerebellar Atrophy with Neuropathy and Vestibular Areflexia Syndrome).
How many years have you been testing? Did you have a dramatic weight loss? That’s the one I cannot get under control. My middle daughter is out of the country but normally she cooks. (an excellent cook if I may say; she learned from the best 😂😜) I’m eating like I did when I was running 25 miles a week except now I don’t run. I’m slow. 🙄 I used to be a “fast” talker. Now I spit and swear out of frustration. I always cuss. My parents were Deaf I’ve been swearing since I could talk. I don’t find words offensive, ever. I don’t understand why people get offended when you bang your whatever hard enough you can feel a “heartbeat” uhhh **** is completely appropriate. I’m not going to say sorry, it would be an empty apology. ✌🏼💞🤟🏻🤙🏻
Some people prefer friends and spouses with character!
🥴I was misdiagnosed in the 1990s (Epilepsy). It was obviously the start of ataxia symptoms, and they were misunderstood. This caused years of misery, and ‘fighting’ with doctors.
Eventually after I started having falls, someone took notice, and sent me for a Tilt Table Test and an MRI. I fell about after the Tilt Table Test, acting totally drunk, and the MRI showed mild Atrophy. Subsequently I was tested for common types and found to be negative, but symptoms led to a diagnosis of Idiopathic Cerebellar Ataxia.
But later I took part in a local trial where my whole genome was looked at, that’s when a partial link was found with the mutant gene, SYNE1.
Since then my DNA has been kept on file. It’s possible I have a Recessive type, or an Episodic type , or CANVAS. (I’ve never experienced a noticeable weight loss)
Thank you for sharing your information. That sounds like absolute SUCK! 90s! I was diagnosed with bipolar in 1993. I’ve been at war with the medical field. Back then I hid it.,,,I was told later I didn’t do a very good job. 😕 but really I’m a high functioning bipolar. I’ve been taking Klonopin for over 20 years. Now EVERYONE has a mental disorder and man....they LOVE to talk about it. I’m happy the stigma is abating a bit I’m just pissed that’s always the go to, “ ok she has bipolar “. I get locked up for 48 hours. Longest stories, anyway why do medical professionals feel the need to have an answer? In my life they’ve been wrong 80% of the time. I’m being generous. I’m good with ataxia , cause unknown. Maybe I am crazy?!!? 😂😂😂💞💞💞
Not what you're looking for?
You may also like...
Doctor appointment
Appalling Outpatients Appointment
Neurology appointment
Appointment date!
Appointment at John Radcliffe Hospital
Neurologist appointment 
Ataxia and New Doctors
Sheffield neuro visit 
Oxford Ataxia Centre at John Radcliffe Hospital
Blood tests negative - now what?
