I used to be a model and went to walk in heels and fell. I had a couple of symptoms before, but put them down to other things... the loss of balance was when I knew something was very wrong
The random forward rolls when walking along kinda hit home that something was not quite right
great post. thanks for sharing and creating this discussion.
I found out yesterday through all my life of not knowing that my ataxia is not yet known, its not type 1. To 10, it’s not frenchize it’s not known yet, I can’t believe we wasn’t told this before
Wow, I had the urination thing also. Went to the ER and they looked at me funny. MIne is triggered by gluten though
Oh my goodness…mine started our the same way in 2006 but with facial rt. skidded drooping and a rt hans tremor.
Julie Hahn said:
Fatigue was my first symptom. I had slowly over years stopped having a social life because I was too tired. I would come home from my part-time job and just lay down the rest of the day.
The next thing was dropping stuff all the time. I broke every coffee cup we had in our house. Things just fell out of my hand. Then it was “wall walking”. I had to use the wall to keep balanced.
Hi julie that exactly what happened to my when I was eighteen working in the kitchen at the bull n vic, I used to balance my self by holding onto walls and work tops, now I’m 26 I’m worse i can’t walk unaided, I furniture walk indoors and use a scooter outdoors. Also I gave up work coz of my tiredness I feel knackered after climbing the stairs…
Yes, I agree, ataxia REALLY tires me out! I think it's because it takes a lot of energy to do anything, and I use my muscles differently just to hold myself up. Does anyone else feel this way?
It started when I was 11. I had vertigo and contstant nausea and vomiting. Lost
lots of weight...GP didn't know what it was after many tests...so he sent me
to a psychiatrist 'cause he thought I was a malingerer. Surprisingly, the
psychiatrist thought I was relatively sane, and referred me back to the GP.
The GP sort of washed his hands of it and didn't pursue it. I came good
after 2 years spontaneously. However, up until I was 45 I had episodes
where I felt to fatigued, balance was off, had difficulty swallowing, got
slurred speech when I was tired and had fuzzy-brain syndrome. I was
known to be someone that had never grown out of the teenage years
....still clumsy and falling about. During this time I would go to Drs and
explaining the symptoms...they would always say...come back if the symptoms
persist. Not one of them thought to refer me to a neurologist.
When I got to about 44 the symptoms galloped and got far worse....no
more episodes of it.....it was there all the time. I can remember shopping
one day and not sure how I managed to get back to the car....I just
couldn't walk...it was as though my legs had turned to jelly. I sort
of dragged myself to the car...people thought I was drunk and
didn't help. A turn at line dancing was not a success as I lost my
balance and knoocked a whole line of people over. I was diagnosed
with Cerebellar Ataxia about 12 years ago. I was now walking with a
walker.
... 7 years ago I was diagnosed with haemochromatosis.
- iron over-load disease. After numerous venesections I am improving. I can now
walk with just a stick to balance me, although I still get fatigued...not half as
much as I did 10 years ago. I saw another neuro about 6 months ago who
was experienced with Haemochromatosis and he told me that CA was a rare
complication of iron-overloading. There has been damage done and I am not
going to be cured but if I stay at the leveI I am now..it'll do me. I
take SERC & diamox, baclofen and motillium for nausea. Also Vit B12,
CoQ10 and Vit E. This is too long...sorry...they don't call me Rambling Rose
fo nothing.
Hi Rose,
Thanks for that story, although i’d rather you did’nt have to tell it…
There is so much i can directly copy on to my own story! The relatively mild episodes some weeks, months apart. The fatique, the ignorance by doctors, well the lot i guess. Only fortunately not the constant state. Yet…
Does any one take any medication for their symptoms of sca?
Hello Hans
Thankyou for your feedback. Yes...I wish I hadn't had to tell it either LOL. However,
I was relieved when I got a diagnosis...it was then that they could prescribe some
meds to ease the symptoms a bit....I was fortunate that they worked for me.
I've also come to look at it differently....that it was an opportunity to "do" other
things. No line dancing etc.LOL but my life seems to have gone in another direction.
I realised that life had to be lot simpler eg, learning to cook quickly so that I didn't
get too tired and feel like throwing it all out the window. I probably find the most
difficult symptoms...the fuzzy brain....normals daily tasks cease to become
automatic and I get in a muddle. On the positive side....I don;t have that symptome very day
now which is a bonus.
Hans said:
Hi Rose,
Thanks for that story, although i'd rather you did'nt have to tell it...
There is so much i can directly copy on to my own story! The relatively mild episodes some weeks, months apart. The fatique, the ignorance by doctors, well the lot i guess. Only fortunately not the constant state. Yet...
Hello Marty
Thankyou for your feedback and your story. I was born in London but live in Tasmania Oz now....came here
when I was 18. We don't have too many people with Ataxia in Tas....around 4..I was told. So this forum is great
to be able to talk to others with it. I live in a very small town...just 2000 of us and live remotely so I don't see anybody with
the disease. I am fortunate I have a very good GP.
Marty said:
hi rose,i can relate to everything you say.i have episodic ataxia type 2,and had my first symptom at 10yrs old,losing my balance at school.im now 51.i wasnt diagnosed with episodic ataxia type 2 until 30yrs old.i just assumed i had really bad migraines.i was also sent to see a psychiatrist,but was found to be normal(at least they knew i wasnt mad)ha ha.i also had an ECG.again nothing.and an EEG.and again nothing.i was tried on various migraine drugs that done nothing for me.it wasnt until i reached 30,when at long last my GP sent me to see a neurologist at charing cross hospital in london.after explaining my symptoms to him,he wrote back to my GP and confirmed i had familial periodic ataxia.which my new neurologist now calls episodic ataxia type 2(EA2).i was put straight away on diamox,and been on ever since.
even my own sister thought it was because i was always a funny eater,that i had these attacks of dizziness and vertigo. .....martyRose Macaskill said:It started when I was 11. I had vertigo and contstant nausea and vomiting. Lost
lots of weight...GP didn't know what it was after many tests...so he sent me
to a psychiatrist 'cause he thought I was a malingerer. Surprisingly, the
psychiatrist thought I was relatively sane, and referred me back to the GP.
The GP sort of washed his hands of it and didn't pursue it. I came good
after 2 years spontaneously. However, up until I was 45 I had episodes
where I felt to fatigued, balance was off, had difficulty swallowing, got
slurred speech when I was tired and had fuzzy-brain syndrome. I was
known to be someone that had never grown out of the teenage years
....still clumsy and falling about. During this time I would go to Drs and
explaining the symptoms...they would always say...come back if the symptoms
persist. Not one of them thought to refer me to a neurologist.
When I got to about 44 the symptoms galloped and got far worse....no
more episodes of it.....it was there all the time. I can remember shopping
one day and not sure how I managed to get back to the car....I just
couldn't walk...it was as though my legs had turned to jelly. I sort
of dragged myself to the car...people thought I was drunk and
didn't help. A turn at line dancing was not a success as I lost my
balance and knoocked a whole line of people over. I was diagnosed
with Cerebellar Ataxia about 12 years ago. I was now walking with a
walker.
... 7 years ago I was diagnosed with haemochromatosis.
- iron over-load disease. After numerous venesections I am improving. I can now
walk with just a stick to balance me, although I still get fatigued...not half as
much as I did 10 years ago. I saw another neuro about 6 months ago who
was experienced with Haemochromatosis and he told me that CA was a rare
complication of iron-overloading. There has been damage done and I am not
going to be cured but if I stay at the leveI I am now..it'll do me. I
take SERC & diamox, baclofen and motillium for nausea. Also Vit B12,
CoQ10 and Vit E. This is too long...sorry...they don't call me Rambling Rose
fo nothing.
My first symptom was falling. I blamed it on being clumsey. Well, not any more. Another symptom that felt very scarey to me was, when I bent over, like to tie my shoe, then got up, it felt like the room was spinning and I was so dizzy. But now I am all too familiar with these symptoms. What do we do, but just keep pushing through this terrible disease.
I have always been very clumsy, falling frequently and very uncoordinated. I started falling more frequently about 3 years, but I don't know if it is related to what is going on now. I also have had the very frequent urination, extreme fatigue and drowsiness. Starting about a year, year and a half ago I started also having lots of bone and joint pain and stiffness ( don't know if it's related ), trouble breathing and swallowing - which is getting much worse. Some shaking and increasing severe clumsiness and weakness started about six months to a year ago. It got to where I couldn't do things like use buttons, or a can opener and would have a really hard time buckling seat belts - that sort of thing. I had always been a nightime shower person, but I would get too weak and I was worried I would fall, so I started showering in the morning when my husband was around. I would also need to kind of wall walk, grab on to things -- at the time I thought it was mostly related to possibly rhematoid arthritis that my doctor thought I might have. I didn't really make a connection between all the various symptoms and the frequent falling.
3 months ago I fell suddenly, for no apparent reason, and the shaking/ tremor/ weakness loss of balance has made it so I can't walk without support ever since. I use a rollator at home, but the shaking /tremor in my arms and body is and head is making that difficult. It seems to be progressing very very quickly. I don't have a diagnosis yet -- my doctor is leaning towards a virus related Cerebellar Ataxia - but is also testing for Lyme, and a few other things.
Hi Oblidioblida,
What a frightening story! I really feel for you.
A question though; did you see a neurologist yet, i"m sure you must have but more importantly; did he have an EMG made? Given the severeness and rapid progression i think they should rule out all other possibilities.
I can definitely relate to the bone and joint pain and the stiffness!
Hello Oblidoblida,
I'm so sorry you're having so much trouble! Have you had an MRI of you're brain, as cerebellar ataxia would show atrophy of your cerebellum. I have sporadic cerebellar ataxia (atrophy of my cerebellum/non-hereditary/unknown cause). It effects my balance/gait (I've fallen several times and now use a cane), dexterity (writing/printing/fine motor skills), speech (slurred) and swallowing (choking/coughing). I don't have tremors though. I do have stiffness in my muscles and joint pain, especially in my hands, but I attribute that to the way I use my muscles and joints. It takes A LOT of effort to do anything with ataxia! Anyway, I hope your doctor discovers a diagnosis soon...I'll be thinking about you!
Il tell u my life story, ever since I was 5 I learn about ataxia because my mother was told she may have spinal cerebellar ataxia, I have been with my mum til she died when I turned 18, I had 3 sisters, twin sisters and an elder sister my twin sisters dies at thee age of 25 suspecting causes of Sca, about 3 years ago. My sister and I see a specialist in London queen square hospital, we have been told we’ve been living a life not knowing what type of ataxia we have. To this day our gene is unknown by all doctors and professors. Every 6 month we go to the hospital to give blood as they are puzzled, I want to be well I’m only 26 lost most of my family due to this poxy illness, in order I know I’ve lost to this illness my nan, uncle, mum, twin sisters, I just wish I knew more of my family… My symptoms are not being able to walk, I use a scooter to transport, my speech is impaired, muscle weakness, balance loss, lack of coordination, dexterity, muscle wasting, drowsiness.
Hi Hans-I had an AVM bleed and then in a coma for three weeks. I was diagnosed with ataxia after the Emergency ICU in the one rehab. Inpatient hospital.
Hi Rose and Hans, thanks for your concern ! I haven't had an EMG, I don't know why. I've had MRI's when I was in the hospital 3 months ago and they were normal -- well, I think they said there was some normal atrophy due to age ( how to make me feel ancient - I'm 49 yikes !!) They did the original testing based on possible MS, and because we pushed for testing- mostly the hospital neurologists attitude was extremely rude and dismissive and that it was all due to 'stress'. I like my current Dr., as he actually listens to me -- but it did concern me that I asked him about testing for types of cerebellar ataxia -- and he said there wasn't really a reason to test for specific type since they are incurable, and I won't be having children . That didn't make much sense to me -- I'm clearly getting worse quickly, and don't really want to have just a vague -- "post -viral - will probably go away within the next 2 years" Plus, it seems there are treatments for some things, if not cures, and I would like to get the appropriate ones, and not just be in limbo. Sorry for the thread de-rail.