Ive had a mild form of SCA for a very long time, falling, dropping things and wobbling. This I can and do accept.
But today I kept an appointment for assessment for the LIFT team. Many of you will know what this is. Basically it's using equipment safely, with a programme set out with constant supervision. I had to meet someone called Nigel at the gym between 8 and 8.30 am.
I noticed some scales and got on them. Nigel asked me if I wanted to take my rolator round with me while he explained everything.
I don't know how to describe what happened next but will try..........my body went into complete spasm, I had no control at all, except I knew what was happening. I tried deep breathing but choked. I couldn't speak at all. If I tried to say something, I seemed to shout and only one word (if that's what it was) came out. My head wasn't shaking, it was, together with the rest of my body 'flailing' for lack of a better explanation. Any movement I tried to make was magnified 1000 times.
Nigel was very good and calm. I was vaguely aware of other people next to me. I reckoned I could get one word out at a time, although it was shouted. Managed to ask them to ring home. The 'attack' gradually lessened so when Robert arrived I was nearly ok.
I am recovered now. But this happened only once before, some 30 years ago, pretty much the same.
What should I do please? I saw Dr Giunti when the clinic started up. Should contact UCLH? Will they be interested in a 73-year old woman? My GP probably wouldn't be able to help?
Finally I do have a couple of things on my mind - knee replacement and a lump in my breast following a 'walking into the door' routine. (The bruise was spectacular)!
Hi Sarah-Jane, Yes, I would talk to your neurologist or doctor (GP). I have no medical background what-so-ever, so I'd be amiss to advise you! I can only imagine how unsettling that was! I live in the States and have Sporadic Cerebellar Ataxia (non-hereditary/unknown cause). I am 59 years young, diagnosed 10 years ago. As Beryl said. age is not a factor. You sound like you have a very positive attitude, and that's half the battle! My best to you... ;o)
Hello Sarah Jane. A lot of what you are describing happened to me a year and a half ago. I was perfectly fine, never had a sign of ataxia . I was 67, got up one morning and all at once, lost my balance and fell to the floor, completely unable to get up, no matter whI trid and like you I felt my limbs were flailing all over the place and my movements were amplified a thousand times. Weirdest feeling. However, I did not loose my speech at all, just a little slurred.
My husband called the emergency services and I was taken to the hospital by ambulance. I had several CT scans which showed a cerebellar stroke. The cerebellum is the part if the brain which control your balance and mine is now completely gone. Also,it controls your coordination, so this is why if it is damaged, either by a genetic problem, a stroke or a brain injury, we will develop ataxia, which I developed in one instant.
As Beryl an Rose said, you should see your neurologist. If you had a stroke, you need to find out what kind it was (an eschemic, caused by blood clot, or one caused by a bleed) in order to put you on the right medicine and prevent another one.
I am not a doctor either, just telling you of my experience. Good luck and my best wishes.
I had a brain injury five years ago. About 3 months later I started having episodes very much like what you are describing and it was unbelievably scary and some of the times went on for a half hour or more with spasms causing dislocations and damage and all this while conscious. . I was seeing neurologists and none come up with anything helpful to control them. I was having them more and more frequently until it was a couple times a day and them they became less frequent over the course of about a year, The conclusions was that it was not a true seizure and not epilepsy . It was considered as a by-product of healing and forming of scar tissue and the body dealing waste products from the dead tissue in the brain because it started 3 months past injury.
The other options were a form of massive migraine style attack or medication triggered reactions that caused a cascade effect.
I am doing better now and balance and dizziness are my biggest issues now. I want to agree with everyone that you should see a regular doctor and a neurologist to look into all risk factors but hopefully that was just a one time thing for you.
Linda’s post reminded me of a strange episode I had 8 years ago, when, in the middle of the night, I was unable to move and talk. By the time the ambulance came, I was almost fine. My neurologist after questioning me, first thought it was a TIA (trans ischemic attack) or mild stroke, then later decided it was a migraine variant which can mimick strokes. It was terribly scary. I never had any side effects from this episode, but 7 years later had a real stroke which resulted in ataxia… The brain is a very complex thing!